“Gentleness and kindness will make our homes a paradise upon earth.” C. A. Bartol
Last week the world went a little crazy. This week we are all taking a breath, a pause and most of us are working from home. Schools are closed and we are self quarantined and wondering what do we do now? I think the answer is simply to be kind. Every act of kindness creates a ripple effect.
I witnessed the most beautiful act of kindness yesterday when going to the grocery store. I arrived 45 minutes before the store opened, on accident. The first person in line was a homeless man, the second person was Tom who owns a local restaurant and I was the third in line. The homeless man and Tom told me to stay because the line would grow. The first act of kindness. It was cold and started to rain. Tom, the next in line, gave us purell wipes for our carts from his car. Kindness act number two. I gave the homeless man the $10 in my pocket, he thanked me so kindly and sincerely and asked if I was sure. I said I wish I had more. I then asked the man behind me to come out of the rain and moved the line-up and he then gave his umbrella to the man behind him, kindness number five, and the kindness just kept happening. It overwhelmed me and made me cry to see such kindness and compassion.
There are so many ways to be kind and it just feels good to help one another, especially in times like this. So to keep this ripple effect going I thought I would share a few suggestions to help in ways little and big. Every little gesture moves us all forward in a better place.
First and foremost charity starts at home. So make sure that you and your family have everything they need for the next couple of weeks. Make sure you are stocked up on supplies and staying home.
After you have taken care of yourself and your family, call and check on your elderly neighbors. See if you can leave anything at their doors or have a meal delivered. Post-mates, Door Dash or Grub Hub can easily do this. In addition, ordering from these sites also supports local restaurants and small businesses that need our support right now, so ordering a meal for a neighbor is a win-win for everyone.
Speaking of small businesses another small way to help is to buy gift certificates from your favorite hair salons or local businesses. This way you help them with cash flow now and have something to look forward in the near future. A small gesture that can go along way.
There are so many people that have been homebound long before the coronavirus and incredible organizations like Project Angel Food have been bringing meals to the sick and elderly. Project Angel Food has been busy trying to prepare additional meals and could use volunteers and donations. On a national level Meals on Wheels is doing the same thing and any donation helps those who can not get out or prepare their own meals, visit their website to find out how to support your local chapter. If you aren’t going out to dinner maybe donating a dinner for someone who needs it will make you feel just as great?
Most schools have now closed or are closing soon, nearly 22 million students receive their only meal of the day at school. No Kid Hungry is determined to help these children through the current crisis. By supporting No Kid Hungry you helping a hungry child here in the United States.
As our elderly and children are the most vulnerable populations during this crisis finding ways to support those in need is important. Save the Children is an organization that has been working with the World Health Organization and around the globe to work with young children around the world. Last year Save the Children helped 134 million children in over 120 countries. In the United States, more than 14 million children, or 1 in 5, grow up in poverty. Save the Children helps children around the globe affected by poverty, famine, and disease.
So, remember that charity starts at home. Start with your own family, then your neighborhood, local community hospital or food bank and then look to the national and global organizations. We are all in this together and every little bit of kindness, compassion, and generosity makes an enormous difference. We will get through this together.
Charity Matters
YOUR REFERRAL IS THE GREATEST COMPLIMENT, IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.
“All the art of living lies in a fine mingling of holding on and letting go.”
Havlock Ellis
2020 began like all New Years with hopes, wishes and dreams for the new beginning and the decade, it has been a difficult month for so many of my dear friends. There has been enormous loss, sudden and unexpected change, serious health issues and a host of challenges that were not in the dream category. I originally wrote this post six years ago and sadly it seems appropriate to reshare now. I do want you all to know that I do have a few amazing interviews in the cue and I promise that February will bring more incredible introductions and inspiration. Somehow they just didn’t feel like the right thing to share right now.
Twelve years ago I had a phone call that changed my life, a car accident, death, and nothing was simply ever the same after that call. A dear friend just received that same call and so it all comes flooding back…the pain, the loss, the heartbreak that feels like it will never end….it is simply too much. There are simply no words….
As I struggle with how to hold up my friend, I find myself thinking about loss and growth. I think many of us feel that growth comes in tiny layers added up over time and that each day’s journey gets us a little closer to inner-growth. I have a different theory.
I believe life is like an earthquake where huge jolts cause cataclysmic shifts like tectonic plates to our souls. In nature, these shifts result in mountains. Inside each of us is a similar experience. When the rocking stops we somehow come out shifted. Our vision becomes clearer, we see what is important for the first time, we learn gratitude in everything and the growth is as monumental as a mountain. It is the growth of our soul.
Joan Didion writes, “we are imperfect mortal beings, aware of that mortality even as we push it away, failed by our very complication, so wired that when we mourn our losses we also mourn, for better or for worse, ourselves. as we were. as we are no longer. as we will one day not be at all.”
When I sat down to write this week about the soul, I had no idea how I would conclude. I certainly didn’t envision this, but as I struggle and question why? I don’t know why an earthquake has leveled a family, I can only pray that the shift will bring the strength, foundation, and the beauty of a mountain to each of them.
These are simply words when there really are none…
“The eyes are the window of the soul.” English Proverb
I don’t usually repurpose stories but this one was more than worth sharing and is truly all about 2020 vision. I turned on the TV shortly after New Years to find this story about a young boy named Jonathan Jones. Jonathan was born color blind, as are 300 million people. One in 12 boys in the United States each year is born color blind. Can you even imagine a world without color? What is a sunset like without it? In November Jonathan was given a special pair of glasses that gave him the ability to see color for the first time. The youtube video below went viral.
What happened next was what I wanted to share. Instead of just receiving the gift that gave Jonathan color vision, he wanted to pay it forward. Jonathan and his mom, Carole decided to start a Go Fund Me page to raise funds to provide even more glasses for other kids just like him. They asked for $350 donation on their Go Fund Me Page, which would pay for one pair of glasses. The first night Jonathan’s page was already at $1,000.
A few weeks have passed and at last report, Jonathan had raised more than $35,000. When the company that makes the glasses, EnChroma, heard about the story they committed to matching his donation which is already well over 130 pairs of glasses or a world full of color for so many deserving people. True 2020 vision.
Charity Matters
YOUR REFERRAL IS THE GREATEST COMPLIMENT, IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.
“Nothing is given to man on earth – struggle is built into the nature of life, and conflict is possible – the hero is the man who lets no obstacle prevent him from pursuing the values he has chosen.”
Andrew Bernstein
There is nothing I love more than meeting new people. To me, each new person that I come across is like unwrapping a gift. I love learning people’s stories and what makes them tick. Meeting someone new is a never-ending source of joy for me. Some people collect certain things, I collect people because to me they are what matter. This past year I am so excited about the people that WE met at Charity Matters. When I meet amazing people so do you. Who wants to open a gift and not share it? So before we look ahead to 2020 I wanted to take a brief moment and look back at some of the extraordinary humans and their organizations that came into our lives this year.
We began 2019 with Tracy’s Dogs. The founders of Tracy’s Dogs, Tracy and Scott Whyatt, a Texas-based nonprofit that rescues thousands of dogs and partners them with new homes said to me, “People don’t find dogs, dogs find people.” Two weeks after that interview a dog from Texas named Lucy found us. An unexpected blessing of 2019 and the gift that keeps on giving. As they say, “Charity starts at home.”
photo credit: Classic Kids
Animals were not the only last legacy from the year. We met amazing women who turned their life challenges into thriving nonprofits. The remarkable Becky Fawcett who learned what it cost to adopt a child and turned it into her life’s mission to help families fund adoption with Help Us Adopt.
Jill Ippolito who showed us the power of love and healing with her inspirational work in juvenile halls with trauma-informed yoga with her nonprofit Uprising Yoga. Teaching and training minors in jail to learn how to process their trauma and break the cycle of pain. Jill used her past experience to help reform prisons across the country and heal generations of children who have experienced trauma and inflicted it on others to learn a new path towards healing. Jill is a truly lovely human and reminded me that whatever gift it is that we have, we need to share it with the world.
Then there was Marcella Johnson who lost a child at birth and used that pain to fuel her nonprofit The Comfort Cub. Marcella and her team provide healing weighted stuffed teddy bears/Cubs to help those mothers who grieve. We had such an incredible conversation that we set up lunch after and a friendship was born, she is a truly special human.
Marcella wasn’t the only new friend made in 2019, Roberta Lombardi the founder of Infinite Strength was so inspiring with her mission to financially assist women going through breast cancer pay for things such as daycare. We talked for over two hours and could have kept going. She is remarkable with her passion for serving and supporting these women and a true girls girl. I adored getting to know Roberta.
This year was not just about the girls, there were amazing men accomplishing unbelievable work, one of them was Seth Maxwell of the Thirst Project. At 19 years old Seth discovered how many people on this planet live without clean drinking water and made it his life’s mission to change that. Now at almost 35, he has. Seth’s organization has actually taken that number from 1.1 billion people without access to clean drinking water to 663 million and he is still going strong. More than that Seth is using his passion to inspire thousands of high school students across the country to join him in his mission.
Speaking of missions we met Colin Baden, the former CEO of Oakley sunglasses turned nonprofit founder, who continues to find ways to use technology to support Veterans with Infinite Hero Foundation. Colin’s humility and commitment to our Veterans left a lasting impression on me and the thousands that he serves. Our conversation left me in awe and reminded me that true heroes serve from a place of humility and Colin is a true hero.
While we met so many incredible and inspiring humans this past year there was one person whose positive attitude, commitment to joy and service left an indelible mark on me. His name is Hal Hargrave and he is the founder of The Be Perfect Foundation. Hal is a paraplegic and his organization works to help provide wheelchairs, cars, physical rehabilitation and a list of services for those with spinal cord injuries. Hal is someone who chooses joy and to live his life in the service of others.
All of these nonprofit founders serve humanity each and every day in so many different ways. I loved every single person I had the privilege of meeting this year and I loved introducing them to you just as much, I wish I could highlight them all here. 2019 was an amazing year and I am excited about what this New Year and decade will bring.
I think the perfect way to wrap up 2019 is with a quote from Hal Hargrave. I think Hal speaks for all the remarkable nonprofit founders and heroes when he said, “I fear not being on this earth more than anything because I know there is more that I have to give to this world and that I have more in the tank. I have an opportunity to either live life for myself or for others. It is an easy decision every day to live my life for others. The most interesting thing about it is that I am always the benefactor, whether it is a smiling face or a new attitude. It makes me a better and more aware person each time this happens. “
Wishing you a Very Happy New Year!
Charity Matters.
YOUR REFERRAL IS THE GREATEST COMPLIMENT, IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.
This past week I was in the New York visiting friends and getting into the holiday spirit and had the chance to talk to an amazing New Yorker and recent nonprofit founder, Alyssa Carfi. A young dynamo with a public relations career by day and someone determined to make a difference as a new nonprofit founder by night and weekends and every minute in between. I often think that people forget that nonprofit founders are entrepreneurs of the best kind, people who start businesses to serve others. Alyssa is exactly that, she has taken her experience as someone who had a brain condition called, ‘cavernous malformation’ and turned it into a remarkable nonprofit called Brave Minds Project.
Charity Matters: Tell us a little about what The Brave Minds Project does?
Alyssa Carfi: We are a 501c3 that focuses on supporting patients between the ages of 10-29 with brain and brain stem conditions. They are the forgotten demographic, it’s a time when your hormones are changing, your life is changing and you are trying to figure out who you want to be, trying to go to school, or launch your career and then when you find out that there is something wrong with your brains, it’s devastating. It completely changes your whole life and affects the people around you as well.
I was 15 when I was diagnosed and 18 when I had brain surgery. When I look back at what I had there were certain resources missing. I was very fortunate to have both a great support system and great doctors but I wanted to provide some of those resources. I remember my 15th birthday, I was in the hospital and a clown came in and gave me a teddy bear, while it sounds funny it wasn’t really age-appropriate. So what we do besides building a community of young people with brain and brain stem conditions, we have created a mentorship program to pair up a patient with someone in the outside workforce, so if they want to be a doctor or a teacher or an actress we pair them with a mentor in that field so they have someone to look up too. In addition, we provide things such as courage kits which are care packages for our patients and their siblings which is a fun way we can bring them a little sunshine and a smile.
Charity Matters: What was the moment you knew you needed to act and start Brave Minds Project?
Alyssa Carfi: Last November, the day before Thanksgiving I told my parents that I wanted to start Brave Minds Project I am ten years out of my own brain surgery and am still affected by it. Being an adult, I wanted to give back because not everyone is as fortunate as I have been. I’ve been able to go to college, to study abroad, to work and now as I navigate my own place in the world, I knew I had to do this. So, I told my parents I wanted to start a nonprofit and they agreed it was a great idea. So I applied and this past June we got our 501c3. We are just getting started.
Charity Matters: What are your biggest challenges?
Alyssa Carfi: Because of my day job in PR, getting the word out has been pretty easy but the big challenge is that our patients are everywhere and we have to be wherever our patients are so the logistics can be difficult. We continue to partner with more hospitals and build momentum and we would love to be nationwide eventually. It is one step at a time but I honestly didn’t even think we would be this far in our first year.
Charity Matters: What fuels you to keep doing this work?
Alyssa Carfi: It is a lot but it is also very rewarding to hear the patient’s stories and they are inspired that I went through the same thing. We had one patient who was 24 and a year out of brain surgery. I talked to him and told him how incredible he looked for being only a year out of surgery. I told him that I waited for ten years until I met someone else who had even gone through what I had. He was so excited to just have an honest reference point for how he was supposed to look. The work is hard but it is truly rewarding to connect people going through this. Now that same 24 year old is sharing his story to help others as a Brave Minds Project Ambassador.
Charity Matters: When do you know you have made a difference?
Alyssa Carfi: It is those moments when we support our patients which means so much. We had a patient recently that is 19 years old college student with a brain tumor that affects her vision. She needed a very special and expensive contact lens. The Brave Minds volunteers surprised her with this special lens so that she could see. She was beyond grateful, those are the moments that remind me that we are making a difference.
Charity Matters: Tell us what success and impact you have had?
Alyssa Carfi: The biggest impact so far has been the patients that we have helped and their patients. Overall, the connection we have created by bringing people together within this community is something you can’t put a number on. We connect patients to other patients and have incredible events at The Brain Bar, in patrnership with Stroke of Genius, where we bring in speakers such as well known neurosurgeons to talk about various topics, like combining yoga and brain surgery and why its best for recovery. Friends and family of patients have also met and created another level of support.
Charity Matters: If you could dream any dream for your organization, what would that be?
Alyssa Carfi: As we come upon our one year anniversary of the Brave Minds Project, my dream would be to raise more funds to put resources into building more programs. I want to continue to foster our community along with our programs. We have so many great things in place and I am really excited about where we are heading in trying to help this demographic of patients along with the hospitals and institutions. I think that we are bringing people together that can really help to move the needle.
Charity Matters: What life lessons have you learned from this experience?
Alyssa Carfi: I always knew I was going to do something based on what happened to me. I know I was put on this earth for a larger purpose and this experience has taught me that anything is possible. I work really hard to make this happen and I work really hard at my job. All the funds raised by the nonprofit go right back into the organization. I have gotten very good at focusing and compartmentalizing to get things done. The Brave Minds Project has reminded me that people always want to help and I am always amazed by the gifts of time and effort put into showing up and supporting this work.
Charity Matters: How has this journey changed you?
Alyssa Carfi: I have grown as a person. This has been really freeing because not everyone knew my story. I wear my story every day I have 6th and 7th nerve palsy which is where your eye and smile are affected. As a result, I have had a lot of cosmetic surgery and it is definitely better. Starting the Brave Minds Project has forced me to be vulnerable and to open up and say, “Yeah I had this, this is what happened to me and because of this I now run a nonprofit to help others like me.” People no longer see my limitations anymore but the whole picture of what happened to me and how I was able to turn it into something good and that fuels everything that I am doing right now.
Charity Matters
YOUR REFERRAL IS THE GREATEST COMPLIMENT, IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.
People who move change the world. That is the slogan for the Parkinson’s Foundation and this past weekend that is what our family did, we moved. We are a family of action but this weekend our movement was different. On Saturday, we moved to support my stepmother, Nan, who was diagnosed with Parkinson’s Disease ten years ago. This year alone another 60, 000 people will be diagnosed with the disease. So when my sister-in-law reached out to everyone and said let’s walk for Nan, we were all in.
Over one million Americans live with Parkinson’s Disease and every nine minutes someone new is diagnosed. There are ten million people worldwide living with Parkinson’s disease. While we think that Parkinson’s affects older people, ten percent of the diagnosis are for people under the age of fifty.
So before we began our walk on Saturday we each grabbed a ribbon to walk with. The blue ribbon was for the person with Parkinson’s disease. The gold for the caretaker living with someone with the disease and the silver ribbon for those of us that supported a loved one with Parkinson’s.
What exactly is Parkinson’s Disease? It is a chronic and progressive disease that at its most simple definition is a movement disorder that affects the ability to perform common daily activities. Parkinsons is often characterized by its most common motor symptoms such as tremors, stiffness of the muscles and slowness of movement.
The American Parkinson’s Disease Association was founded in 1961 and even google could not help me find out who founded the organization, so that will have to wait for another post. What I do know is that since that time the organization has raised over $185 million dollars to help research, educate and help us to find a cure for this disease.
So on Saturday, we carried our ribbons and walked for Nan and for my dad and for all of those who love and care for someone with Parkinson’s.
We raised money, sent emails and did social media to get the word out and my sister and brother-in-law even sponsored the porta potties for the event. This isn’t our typical family photo….
As the Parkinson’s Foundation says, “People who move change the world.” There was simply nothing better than seeing Nan and my dad moving together, our family and hundreds of people supporting one another to change the world and the face of this disease one step at a time.
Charity Matters
YOUR REFERRAL IS OUR GREATEST COMPLIMENT, IF YOU ARE INSPIRED, PLEASE SHARE AND INSPIRE ANOTHER.
” When you come to the edge of a forest and there is no path-make one that others will follow.”
Author unknown
I couldn’t let October come to an end without discussing Breast Cancer. Last year I interviewed an amazing nonprofit founder and breast cancer survivor and since that interview, I have had four friends who have undergone mastectomies. Breast Cancer isn’t something that only happens in October it is something that happens every two minutes every day. One in eight women will develop breast cancer over the course of her lifetime according to the American Cancer Society. Breast Cancer does not discriminate from the rich or the poor. To be honest I had never thought about what happens when you get breast cancer and have no insurance? I assumed that Medicaid and Medicare covered everything. Well, I was wrong.
Last year, I had the most inspiring conversation with the nonprofit founder, Alisa Savoretti, a woman who lived this journey of having a mastectomy and no insurance for reconstructive surgery. The result was the creation of My Hope Chest, the only national nonprofit in the country that takes these women and helps to fund their reconstructive surgery. Alisa and I had an incredible conversation and I left feeling inspired by this amazing warrior who fights for women who truly need one. She has left such a lasting impression on me that I wanted to re-share her story.
Charity Matters: What was the moment you knew that you needed to act and start My Hope Chest?
Alisa Savoretti: Hearing you have cancer is a devastating moment. It’s one thing to hear you have cancer but it is another thing to realize you have cancer, you do not have insurance and you do not qualify for Medicaid. This is what happened to me at 38 years old. I had been working in Las Vegas as a showgirl and had recently moved to Florida to begin an online furniture business before companies like Pottery Barn existed. I had borrowed funds on credit cards to launch Retrohome.com in 1999 when I found out I had cancer. The doctor said to take care of the cancer, focus on surviving and worry about the reconstruction later.
I survived but lived without my breast for almost three years. You have no idea what this does for you as a woman, for your mental well being. During those three years, I reached out to organizations all over the country, government, nonprofit, anyone who could help me to become whole again. I discovered that there wasn’t anywhere to go. I felt deformed, depressed, frustrated, had metal anguish and enormous financial stress.
I went back to Vegas to work at The Rivera and the 1998 government law now mandated that their group policy could not decline me insurance in order to get my reconstructive surgery. I realized how my own self-esteem, confidence, and self-worth as a woman returned when I could look in the mirror and could see my whole physical being once again. It was my healing, a restoration in body mind and spirit.
While I was in Vegas, I volunteered for a NAWBO (National Association of Women’s Business Owners) event. I told the women from NAWBO my story and these women rallied around me and with their help, I was able to start My Hope Chest and had my 501c3, six weeks later on December 3rd, 2003. We will celebrate our 15th anniversary this year.
Charity Matters: What fuels you to keep doing this work?
Alisa Savoretti: Some days it feels as if I am pushing a boulder uphill with a toothpick. And fifteen years of doing this at the grassroots level, the work is very hard. What fuels me is knowing that thousands and thousands of women are missing their breast and this shouldn’t be happening in our country. Making women whole again is our mission. I think about more women are surviving breast cancer and that’s true, but what about their quality of life if they are not whole?
These women are sick and often lose their jobs because they can’t work. They are now disfigured, deformed and depressed. The ripple effect of not being whole is devastating on marriages and families. This work has become my life’s mission. I am not married, cancer made children no longer an option and for the past fifteen years, this work has been my life.
Charity Matters: When do you know that you have made a DIFFERENCE?
Alisa Savoretti: We pick up where the government programs leave off. That is why we exist. Our biggest referrals come from nonprofits such as the American Cancer Society, Susan G. Komen, and Care.org. We get referrals from them weekly and we can not tell our clients if or when they are going to be helped. They sit on a waitlist while we try to raise the funds to make their reconstructive surgery happen. Helping women to become whole again is what fuels me and just knowing that there is always a list of women waiting for us to find the funding.
I know that we have made a difference when we can help them with whatever they have asked for and the letters they send us.
Charity Matters: Tell us what success you have had?
Alisa Savoretti: We help women every year in a small way and I feel blessed that God picked me to do this task. Every time we get the word out about our work it helps fund someone’s surgery. Shining a light on this cause is SO important. We have been able to fill a gap where other breast cancer charities leave off. If there was another organization doing our work we wouldn’t do it but sadly there isn’t anyone else. The women we help are eternally grateful for all we have done and to me, that is the success.
Charity Matters: What is your vision for My Hope Chest going forward?
Alisa Savoretti: We will only exist until there is a cure for breast cancer. Of course, the big dream is that there is a day when our services are no longer needed. Ten years from now I dream that we have enough resources, funding, surgical partners and angel warriors that we can help women as quickly as they are referred to us. I dream of no longer having a waitlist and being able to have a more efficient meaningful impact on these women’s lives.
Charity Matters: What life lessons have you learned from this experience? How has this changed you?
Alisa Savoretti: God had a different plan for my life. I have a quote on my desk that says,” When you come to the edge of a forest and there is no path-make one that others will follow.” I feel like that is what happened with My Hope Chest. My life’s lesson is that when you persevere you will make a difference. The fact that this even exists in 2018 and is still flying under the radar that there are women, thousands of women in this country living without their breast. I have refinanced my home three times to keep the funding going for My Hope Chest. I have taken extra jobs at the grocery store to fund this. I have learned that I have to persevere to help these women in any way I can. I cannot give up on them.
I think that changing even one life is important. Things are bigger than us, this mission is bigger than me and I have tied my life to making a difference. For me, I am grateful I was chosen for this journey. I am grateful to keep doing this work and I pray the Lord that My Hope Chest gets to leave a legacy on this earth until there is no longer a need for our services. That is my utmost prayer.
In the end, I know that I have done my very best.
Charity Matters
YOUR REFERRAL IS OUR GREATEST COMPLIMENT, IF YOU ARE INSPIRED, please SHARE AND INSPIRE ANOTHER.
“It is good to love many things, for therein lies the true strength, and whosoever loves much performs much and can accomplish much, and what is done in love is well done.” Vincent Van Gogh
Breast cancer doesn’t happen only in October but every two minutes in the United States someone’s life is changed by the diagnosis. There are over 3.5 million breast cancer survivors in the United States. One of them is Roberta Lombardi and you may recall our conversation from last year? It was so inspirational that I wanted to share it with you again. Roberta is the mother of three daughters, a breast cancer survivor, the founder of a line of beautiful bras for women who have had mastectomies, and the founder of the nonprofit Infinite Strength.
Her mission is to support women in every possible way (groceries, bills, emotionally, medical bills) who have breast cancer and do not have health insurance. Roberta and Infinite Strength give these women the extra hope they to fight. She is a bright light, a true survivor, and one very special human.
Charity Matters: Tell us a little about what Infinite Strength does?
Roberta Lombardi:While most people have been touched by breast cancer in some way, you do not really understand what it can do to your life unless you have had it yourself. Breast cancer doesn’t just take your breast, it can ruin relationships, shatter you mentally, and is capable of destroying major areas of your life.
How can you try to heal and have the best possible outcome in fighting this disease if on top of all this you are worried about bankruptcy, feeding your family, or paying your bills? Infinite Strength is there to help financially and emotionally support those women so they can hopefully have the best possible outcome from their treatment.
Charity Matters: What was the moment you knew you needed to act and start Infinite Strength?
Roberta Lombardi: I am someone who never wanted to ask anyone for anything. When I was diagnosed with breast cancer, most people had no clue that I had been sick. When I was done, I felt very blessed. They never tell you when you get cancer that you are somehow estranged from who you were before cancer. I could not figure out how to get back to my previous life after fourteen months of going to the hospital every week.
My husband and I were standing in our kitchen and opening the last of our insurance bills and realized that my last round of chemotherapy had cost $80,000. We just looked at each other and my husband said, “What do people do without good insurance or without insurance at all? ” I was lucky, I didn’t need financial help. The minute my husband said it, I thought of all the women I had sat with at chemo for months and knew many of them were women without support.
When I started to put all of this together, I just kept thinking about what if we hadn’t had the financial resources? What if we had not been able to afford food or rent because of medical bills? So, I went to the hospital where I had been treated and asked how I could help?
I had been an event planner in my previous life and wanted to help them do an event to help those women who needed financial support. I also realized it was time to pick up the pieces of my own life and make things better for others. The hospital suggested that I start a nonprofit. I was so grateful and I knew I needed to do this for these women and that was the beginning of Infinite Strength.
Charity Matters: What are your biggest challenges?
Roberta Lombardi: I think our biggest challenges are in creating those long term partnerships with sponsors. After everything I have been through, I now know how important wellness is, and trying to find the right sponsors who are aligned with wellness, who mirror our values, and want a long term partnership is challenging.
Charity Matters: What fuels you to keep doing this work?
Roberta Lombardi: Just when things get difficult, I believe the universe sends me a sign. I can not walk away from this work because it is a part of me and who I am. I need to take that part of me to help someone else and I need to make it better. On those days when life is overwhelming, I’ll receive an email with a story of what they are dealing with in addition to breast cancer.
That is what motivates me to keep going and that is what motivates me to keep upping my game. They say that one in eight women will be diagnosed with breast cancer but it literally feels almost like an epidemic to me. Connecticut has the third-highest rates of breast cancer in the country.
Charity Matters: When do you know you have made a difference?
Roberta Lombardi: I know I am on the right path. For me when I have a quiet moment I think about what we have done when someone really needs our help. One of our women had a toddler who wouldn’t hug her because she was scared of her mom. We found her a human hair wig so that her child would recognize her. I think about that and feel a moment of peace.
I sit and think about what we have done and from every moment that I’ve been able to say we made a difference today. It seems that from that something else builds and it always leads to the next opportunity to do more.
Charity Matters: Tell us what success you have had? What has your impact been?
Roberta Lombardi: We began Infinite Strength in February of 2018 and in our first year we gave away $135,000. More than anything we give women strength and hope so that they do not give up. We come in and help them so that they can keep fighting and not worry about the bills. Sometimes it’s just that one little thing that gives them that light that they need to go on.
Charity Matters: If you could dream any dream for your organization, what would that be?
Roberta Lombardi: My dream would be that they wouldn’t need us and that they will find a cure. I know that if I hadn’t gone through this I would have never met any of these incredible women who have not only survived breast cancer. These survivors have also turned it into something amazing for others. Breast cancer survivors stick together like a family and hearing their stories makes me want to be a part of making this dream reality.
Charity Matters: What life lessons have you learned from this experience?
Roberta Lombardi: I am very mindful now. I have learned that no one knows what is going on behind someone’s smile. We all have something that we are going through. I have learned patience, not to judge, and to give kindness…even if it is just a smile. It is SO simple! Saying good morning to someone can change their day.
Charity Matters: How has this journey changed you?
Roberta Lombardi:All of this has made me a better person and I am more grateful than ever before. I feel so blessed with the life that I have had. In the grand scheme of things, breast cancer has led me to this. I am genuinely happy with myself. Before my happiness was about others and making them happy. Now, I take care of myself. I think true happiness can be just being alone with yourself being peaceful. I am peaceful inside. My life has been good.
Charity Matters
YOUR REFERRAL IS OUR GREATEST COMPLIMENT, IF YOU ARE INSPIRED, PLEASE SHARE AND INSPIRE ANOTHER.
“We must all work together to end youth homelessness in America.”
Jewel Kilcher
Charity Matters: Tell us a little about what A Safe Place For Youth (SPY) does?
Alison Hurst: Homelessness is our number one crisis in LA County. We created a one-stop-shop where young people who are experiencing homelessness or are at risk of homelessness come and access to a whole array of services to assist them while they are homeless and also assist them getting out of homelessness and into stability.
We provide all of the services one would need including; education, employment, health and wellness services, housing and case management services and of course a sprinkle of fun stuff because young people need fun stuff like our healing arts program which provides music, art, poetry, meditation all ways to lure our young people into our services because young people need different things. All of this is topped off with really awesome food, access to showers and clothing. Today we have nine comprehensive programs that make up our continuum of care. All of our programs weave together to meet the different needs of the young people we are serving.
Charity Matters: What was the moment that you knew you needed to act and start SPY?
Alison Hurst: There wasn’t one moment but rather a series of moments. The initial moment was in 2008 when I would take my son to the skateboard park in Venice Beach and see all of theses disconnected kids at the beach, which were actually sleeping on the streets. I’m from London, where we didn’t have a large population of homelessness, but when I came here to Venice Beach and then Hollywood I realized that we had a massive problem with youth homelessness and we didn’t have many resources here on the Westside of Los Angeles. That was the initial spark.
When I met with other nonprofit organizations that were working with the homeless population, I realized that people just didn’t seem to know what to do with the unhoused youth. One of the other initial sparks was when I realized that even the other social service providers didn’t know how to meet the needs of the young people and that they didn’t believe that they wanted the same kind of resources. Even the old Federal policies entitled “Runaway homeless youth” which placed blame on the youth. These youth didn’t run away, they were tossed out and thrown away, neglected and abused.
In learning all of this, I immediately began handing out food packs to these kids on Venice Beach with a bunch of volunteers and realized once I got engaged with the youth that there was literally nothing that separated these kids from the kids in my normal everyday life, other than the fact that they had nowhere to live. The system had colossally failed them over and over again. The epiphany was that I became super engaged in the cause and I thought I could impact that cause by handing out food and very quickly realized that was not enough and started to build the program.
In the last eight years, we have become the leading provider for homeless youth on the westside. We now have a staff of 59 and eight years ago we had zero staff and a handful of volunteers and today we have hundreds of volunteers. While our growth is great the fact remains that more young people are falling into homeless than any other demographic and by young we mean ages 12-24. When we started SPY it was literally to meet the needs of hunger and then as our expertise grew so much of this became around policy change. We have worked with local businesses, government, individuals and the community to help us to be a part of the solution.
Charity Matters: What are your biggest challenges?
Alison Hurst: The biggest challenge we currently have is fighting the housing project that we are trying to expand. While having almost 60,000 folks residing on our streets has increased so has the neighborhood opposition to siting any kind of housing program. Through Measure H and HHH, there are resources provided to build more crisis and critical need housing. The opposition from the community is being slowed down by neighbors’ opposition to all of these projects.
Having access to general housing funding is top of mind always but getting neighborhood buy-in on the two very large projects we are involved in, one is a 54-bed shelter for youth homeless shelter. We have never had a youth shelter ever which will transform the landscape and we continue to face enormous opposition. The second project is a 40 unit development that we will be operating. We have one hundred youth a day currently walking through our doors and we haven’t had any opposition but with these projects, we have had a lot. There is a lot of NIMBY or not in my back yard.
There is a lot of fear and shame. the shamefulness of what we have when there is so much unbelievable wealth all around us. So the shame that comes with recognizing the levels of poverty and drivers of homelessness. Rather than letting that shame motivate you to do something, it becomes a fear of others. I think it is much easier to write people off if we think that they are different from us. The truth is there is very little that separates us and once you come face to face with homelessness you can not deny the commonality between us.
Charity Matters: What fuels you to keep doing this work?
Alison Hurst: The young people we serve. I regularly feel that I am pushing a boulder uphill. As you grow your budget gets squeezed and there isn’t always funding. What drives me is that I have to stay connected with the young people we serve. Every member of our team, myself included, spends a portion of their time in direct service with the kids to stay connected to the work. I have to be apart of the work so I don’t make decisions that are not based on reality.
Charity Matters: When do you know that you have made a difference?
Alison Hurst: When we moved into housing. We had one housing program that we launched last year. We were literally placing young people in the spare bedrooms of community members and we were the first agency in LA to do that. In February of this year, we launched into a transitional housing program and to me, that felt monumental. For years we didn’t have anywhere for these kids to go and nothing to offer but love and connections to resources but now for the first time we at least have 20 young people safely off the streets. We are getting ready to launch a third program for young pregnant homeless youth and families.
Charity Matters: Tell us a little about what success you have had and the impact you have made with SPY?
Alison Hurst: I think there is a combination of things that make us feel that we have had success. From the number of young people, we have moved safely off the streets, which was 127 last fiscal year and I think the number of young people that we have connected to education and employment. Because the two things are absolutely dependent on each other. Over one hundred youth that were connected to education and employment and the additional 127 who are off the street. At the same time we served 1,400 youth and we still have a long way to go. The annualized national number of youth homelessness is around 10,00 young people between the ages of 12 and 25.
Charity Matters: If you could dream any dream for SPY what would that be?
Alison Hurst: I would dream that we would continue to grow our housing resources and add an additional transitional housing program, that we would execute on our Venice Beach bridge housing project. That we can continue to be the first in the class agency that provides a hopeful, safe space for young people to access services and wonderful place that provides employment opportunities for people who want to be a part of the solution as well as a wonderful place to work.
Charity Matters: What life lessons have you learned from starting this organization?
Alison Hurst: The learning curve was SO steep and SO challenging, it feels like being in a Master’s program for the past eight years. I left school at 15 and have never been back. I don’t have a Ph.D. or a fancy degree and never in a million years did I think that I would be here. I learned early to always hire people smarter than you. More than that SPY is all based on relationships, connection, community, and our youth members. Everything we do is about creating connections and community for everyone involved. We would be nothing without all of our community partners. Power in the change happens when you bring everyone to the table.
Charity Matters: How has this journey changed you?
Alison Hurst: I think this journey has impacted me the most in my level of listening and understanding around poverty. I am a much more serious person than I was before because a huge weight has been put on me. I am a much more focused person than I ever was which motivates me. This work never ends it is 24/7 but I am fearless, absolutely fearless and I never stop. SPY is all about light and love and I am not afraid to use the word love, it is the underpinning of everything we do.
Charity Matters
If you are so inspired feel free to pass this along. Who doesn’t love to hear about all the good in the world? You will make someone’s day!
I think the saying that you never know who knows who is a theme always present in my life. A few weeks ago I was at a wonderful event where I met and struck up a conversation with a girl named Allie. We talked nonprofit and Allie, in turn, said that I needed to know her friend Seth Maxwell. Seth is the founder of an incredible nonprofit called ThirstProject. While this may sound like a crazy game of telephone, where that one moment leads to another, it is what ultimately led to my inspiring conversation with Seth and for that I am grateful. It’s not often that 19-year old’s start nonprofits’ but that is what happened in 2008 when Seth and seven college friends who took on an enormous undertaking and over ten years later are literally changing the world one well at a time.
Charity Matters: Tell us a little about what the Thirst Project does?
Seth Maxwell: There are currently 663 million people in the world who do not have access to safe clean drinking water. In developing countries around the world, women and children will walk from their homestead to whatever standing water source is available. Most commonly pond, rivers, swamps and then drinking from those open and unprotected sources that are often shared with animals who defecate in the same water that people drink from causes those people to get really preventable water-borne diseases. Most people don’t realize that diarrhea and dysentery kill more people every year than HIV and malaria combined.
So we build freshwater wells and washing stations in developing countries to give people clean water. It isn’t super unique, there are a lot of great water organizations in the world but what is unique is that we are the world’s leading youth water activism organization. We have a school tour where we send our youth activists to educate high school and college students about the global water crisis and challenge those students to do something about it. We will have 12 speakers total who will go to about 800 high schools and college campuses across the country. So about 175,000 students will sit and learn about the water crisis and in turn, they will do walks, dances, video game tournaments…all to raise awareness to build water projects around the world.
Since we started we have mobilized a couple of million students who have raised about ten million dollars. We commit to giving 100 percent of funds raised to building water projects and we have a pretty incredible group of donors, lead by our board who pay for our operating expenses. We have given 400, 000 people in 13 countries clean water for the rest of their lives.
Charity Matters: What was the moment that you knew you needed to act and start the Thirst Project?
Seth Maxwell: For me, I couldn’t NOT do something about the water crisis. I think I considered myself, a pretty well educated (then 19 year old) and was just struck by how massive in scale this issue was and the fact that I had never heard about it. for how sweeping the problem was both in terms of the number of people at that point. There were over 1.1 billion people without access to clean drinking water but also how far-reaching the negative impact of the water crisis was on so many issues. Whether it was health or access to education, I was truly struck that this wasn’t something that was on the news every night.
It was one of those moments when I was swept up and just knew I had to do something about it. I wasn’t sure what one person could do but knew I had to do something. So, I gathered seven of my closest college friends together and we decided to simply tell these people’s stories. We pooled all our money together ($70) and were able to purchase 1,000 bottles of water from our nearest store. We took to Hollywood Blvd and began giving bottles of water away if people would stop and listen. In one day we spoke to over 1,000 people and were able to turn our $70 into $1,700. and this was used to fund our first freshwater well.
Charity Matters: What are your biggest challenges?
Seth Maxwell: So many people really want to contribute to making an impact and contribute some amount of time and feel like they can walk away knowing they did something that day or at that moment. While this is the least sexy answer but we are pretty limited by the amount of funding we can raise to build our projects. We know how to bring safe water to communities. We know how to build wells and work with local contractors in the communities we serve who in turn get trained on maintenance, repair, sanitation, and hygiene.
This really is a very solvable issue. When we started a decade ago and the number of people who needed clean water was 1.1 billion and today it is down to 663 million people. In just a decade, while the global population has risen the number of people without safe water has literally been cut in half. There will be an end to this issue in our lifetime it is just a question of how quickly we can move this ball down the field.
Our biggest challenge is scale and funding. Especially given our commitment to give one hundred percent of our student donations to our water projects, it makes for some challenges. We are constantly coming up with new and exciting ways to address our challenges and it is an exciting time.
Charity Matters: What fuels you to keep doing this work?
Seth Maxwell: One of two things…first is our students. The work we do with students and young people means there is never a shortage of inspiration. It is easy to keep going when you see a high school student who gives up their birthdays or swims around the Statue of Liberty to draw attention to this issue or raise funds.
We are constantly given the gift to interact with students who are selfless, innovative and creative. Similarly, they have amazing experiences. I can not tell you the number of times I have had a student writing to us saying, “Thank you so much for starting Thirst Project, if it wasn’t for thirst project I don’t know what the highlight of my Senior year would have been.” Incredible things.
On the other side, it’s not hard to stay inspired when you look at our impact in the field. The impact of the water crisis on health, on mortality, when you see a new freshwater project open in a community and have conversations with moms who say they used to have to walk three hours for water. I was worried about getting Collerea or dysentery or diarrhea and now knowing that my baby will never have to make that walk is incredible. These are the kind of things that keep you going when things get tough.
Charity Matters: When do you know that you have made a difference?
Seth Maxwell: It is like the examples I just gave above. When we talk to students who have had an impact because of their service whether it shaped their trajectory for their career, their leadership skills, their social-emotional skills development. It is countless conversations in the field and the idea behind each of those 400, 000 people in the field who now have clean water and the stories of how their lives are changed from clean water.
Charity Matters: Tell us a little about what success you have had and the impact you have made with the Thirst Project?
Seth Maxwell: Impact for us isn’t measured in the numbers that most people would typically look for; yes it’s meaningful to look at dollars raised or the number of water projects built or the number of people given safe water, those are all good and super meaningful but for us how we measure impact is the implication for each of those numbers.
So for example when we bring safe water to a community, yes we can measure the number of people in that community that now have safe drinking water but what is really more meaningful to us is measuring both before and after. Saying before this project was built there were only 39 of the 200 students in this community enrolled in school, presumably because one of their responsibilities would be collecting water for their family or because they were sick from something that prevented them from going to school. If six months to a year after our project we can report back and say we, measured an increase in school enrollment by fifty percent that is really meaningful to us.
We can measure waterborne disease rates before and after and if we can say that before we built a water project that there was a twenty-nine percent rate of cholera but if after our project, it was reduced to four percent, that is really meaningful to us. It is those kinds of things really that matter to us.
Charity Matters: If you could dream any dream for the Thirst Project what would that be?
Seth Maxwell: To see the end of the global water crisis. We believe in a world where everyone has access to safe clean drinking water and we are running really hard at that goal.
Charity Matters: How has this journey changed you?
Seth Maxwell: I think it has changed me entirely. I think one of the biggest ways it has changed me is how I evaluate problems. think I somewhat struggle to empathize with my friends or family with their problems, which to me sometimes do not feel like an important issue in the context of what I see in our work. I have to literally remind myself to be empathetic. My perspective on life and the world has completely changed.
Charity Matters: What life lessons have you learned from starting this organization?
Seth Maxwell: It is hard to pick just one life lesson because there are truly too many. For me learning how to build a community of people who are committed to using their gifts and resources and not just sort of throwing those resources but coming together with an intention and a strategy that is effective to make an impact on problems that are really meaningful. It has been incredible to learn that skill and be able to see it in action and amazing that people are willing to trust me with their time, money and gifts to make that impact a reality.
Charity Matters
If you are so inspired feel free to pass this along. Who doesn’t love to hear about all the good in the world? You will make someone’s day!
“Being perfect is not about that scoreboard out there. It’s not about winning. It’s about you and your relationship with yourself, your family and your friends. Being perfect is about being able to look your friends in the eye and know that you didn’t let them down because you told them the truth. And that truth is you did everything you could. There wasn’t one more thing you could’ve done. Can you live in that moment as best you can, with clear eyes, and love in your heart, with joy in your heart? If you can do that gentleman – you’re perfect!”
Friday Night Lights
Two weeks ago I was in Canada with my husband on a business trip and we grabbed a cab with another couple we didn’t know attending this work event. We began to chat and this amazing couple told us that they had started a nonprofit with their son who is a quadroplegic to support other paraplegic patients with their organization the Be Perfect Foundation. As my husband said, “Heidi only you would share a cab with nonprofit founders.” We chatted with our new friends, the Hargraves, exchanged information and then we went on to take our youngest son off to college.
While we were getting our son settled I reached out to the Hargraves and was connected to their son Hal Hargrave Jr. via email. Hal Jr. and I set up a time to talk the morning I returned home from dropping our son. I was devastated and a mess and wondered why I had agreed to the conversation at that time. I will tell you that God sent this remarkable man into the world to lift us all up and I have thought about Hal Jr. a million times since we spoke. He had a profound impact on me with his incredible unflinching optimism and grace. He reminded me that we each choose our attitude everyday and we all have the power to lift others by choosing to be joyful. I hope our conversation is as impactful for you.
Charity Matters: Tell us a little about what The Be Perfect Foundation does?
Hal Hargrave Jr.: The Be Perfect Foundation is a nonprofit that’s mission is to provide direct financial and emotional aid to individuals living with paralysis.
Twelve years ago I was just graduating from high school and had aspirations of taking over my dad’s business. I was set to go play college baseball at Cal State Long Beach and pursue a business degree and in a wild twist of fate, God had bigger plans for me and put me exactly where I was supposed to be. Some might say that I was physically weak but I was more spiritually and emotionally strong and capable to go out and serve others. I had a huge change of perception of what is important in life and that is serving others.
After a roll-over car accident took my arms and my legs I recaptured my heart and my mind where it was time to go serve. Although I was deemed a quadriplegic, I had never been so capable and able to light the world on fire. Like everybody in this world you have that AH-Ha moment when you identify with things around you and mine was the realization of the lack of support from insurance companies and the inability that many had to fundraise for themselves because of paralysis. That was the need I had identified and I went to my parents and said I think this is what I have been called to do.
My parents said, if you are going to do this you will not expect a dime from this, you will give out of grace and expect nothing in return and as a family, we will support you through this endeavor. The Be Perfect Foundation was kind of born overnight, nine months after my injury in 2007. The mission is to provide direct financial and emotional aid for individuals living with paralysis by providing resources for paying medical expenses, restoring hope, and encouraging personal independence through a non-traditional method of exercise-based therapy.
The mantra of Be Perfect to me means being the best version of yourself that you can be every single day and that starts with your philanthropic heart. Twelve years later we have raised over seven million dollars for those living with paralysis for things like medical supplies, wheelchairs, vehicles, handicap accessible homes, and keeping people in exercise-based therapy programs.
Charity Matters: What was the moment you knew you needed to act and start The Be Perfect Foundation?
Hal Hargrave Jr.: Post-injury in ICU Care there are over 200 people holding a vigil outside of the hospital room and all I can think is what can I possibly do to repay these people? That answer came about on day five in ICU. A friend of mine named Katie came into my hospital room and she breaks down sobbing. At that moment I realized that every action I take and every decision I make affects somebody around me. I realized at that moment that I could play the whoa is me a card or change my attitude.
I said, Katie what are you crying about? She said, “But your not the same.” I said, But I am the same, Hal. I have a heartbeat, I’m here, I can smile, I can laugh, I can communicate with you. Everything is going to be ok. And in that minute she smiled and hugged me and that was the beginning of me realizing that I and all of us have the ability to have a positive effect on people. My approach to emotional intelligence transcended at that point. I believe we can control two things in life. One is how we feel about ourselves and the other is how we behave.
Charity Matters: Tell us what success you have had? What has your impact been?
Hal Hargrave Jr.:Let me just start with the most important number which is zero. I think our biggest impact has been that we are a one hundred percent volunteer endeavor and that zero dollars go to administrative costs. You will do this to serve others for the rest of your life because this is about other people and it is not about you. I want people to know that this mom-and-pop organization gives 100 percent of funds to those we serve through program services. We have raised over seven million dollars providing over seventy-five wheelchairs for people in need, we have helped over 400 people stay in our exercise-based therapy programs. We meet people in the acute care setting typically within 72 hours of their accident to talk to remind them of the great possibilities that are out there. We also treat people with all types of neurological disorders now outside of spinal cord injuries. Be Perfect is a way of life and we want everyone to try to be a better version of themselves.
In addition, my family owns an outpatient recovery center called the Perfect Step. We went into business twelve years ago with a local gym called the Claremont Club. The gym wanted to know how they could be a part of my recovery. The gym built out the racquetball court and I was the sole client. Now the facility is 7,000 square feet with 100 clients. While my family owns this business 100% of the proceeds go to the Claremont Club. We see 100 clients a week and many of our fundraised dollars go into making it possible for these patients to receive the exercise program. I am the facility director at The Perfect Step and Executive Director of The Be Perfect Foundation.
Charity Matters: What are your biggest challenges?
Hal Hargrave Jr.: I went to the University of LaVerne for my undergraduate degree and then I got my Masters in Leadership. I also met my beautiful wife there as well. We were married last September. The University President asked me to stay and help them fundraise for their annual giving. Through that experience, I realized that our biggest hurdle is from an annual giving perspective of getting those repeat donors. Seeing those dollars and cents in that continuous repetitive transaction create value in people’s hearts. We are also trying to empower others and give them the platform and the voice in the community to raise funds for us.
Charity Matters: If you could dream any dream for The Be Perfect Foundation, what would that be?
Hal Hargrave Jr.: Our intent is to take the Perfect Step national. We want to provide Perfect Steps in every major region across the country so these patients have access to a low-cost recovery model. They are similar to fitness clubs which help our patients with long-term sustainability. We would like for The Be Perfect Foundation to grow in tandem with The Perfect Step. The dream would be to have the nonprofit be able to raise money for local chapters across the country to give patients access to this program. The dream for the Be Perfect Foundation for the next five years is to create an endowment that would sustainthe organization for life. I want to have a broader vision to ensure that our work is carried on for years to come.
Charity Matters: What fuels you to keep doing this work?
Hal Hargrave Jr.:To be quite frank about it, I fear not being on this earth more than anything because I know there is more that I have to give to this world and that I have more in the tank. I have an opportunity to either live life for myself or for others. It is an easy decision every day to live my life for others. The most interesting thing about it is that I am always the benefactor, whether it is a smiling face or a new attitude. It makes me a better and more aware person each time this happens.
There is a level of excitement for me when I wake up every morning because I don’t always know what is going to be. Sometimes something seems negative because not everything in life is rainbows and unicorns in life. When we try to see the good in everything in life, we can always have a positive outcome with what surrounds us. There is a sense every day, philanthropically speaking, that if my face is attached to this foundation then it better be the best and be the most authentic and sincere way possible. At the end of the day, there is one thing that matters to me in life and that is my authenticity and sincerity is what matters. If you are going to be perfect you have to get up and be the best version of yourself every day. God has great plans for me, I need to listen to him and I need to stop talking about all the problems in the world and I need to be a part of the solution.
Charity Matters:When do you know you have made a difference?
Hal Hargrave Jr.: Sometimes as simple as it is, getting a thank you note from someone. Having humility is one of the toughest things to have in this world. There are a lot of takers in the world but when someone comes up to me and says, “How can go out, and can I pay it forward?” When someone wants to know how they can be there for others. When I can get someone to say how can I be involved, I know that is what the intent of this is for, to not only show people how we can be there for them but how they can get back up on the high horse and start being there for others. When we can create a world where everybody is a giver and not a receiver….can you imagine what this world would be like?
Charity Matters: What life lessons have you learned from this experience?
Hal Hargrave Jr.: We live a life with underlying intent. We all believe that we are at the center of our own universe and with everything that is going on around us rather than what is going on within us. We act to take of ourselves and not others. We are hard-wired to protect ourselves first. I have had to learn to get out of my own way and that it doesn’t start with me but with others. I have to remind myself when I’m stressed to remove myself by one degree and say to myself that A) I can handle anything. Nothing has ever taken me down. B) Find a way to put others before yourself. C. Always lead with empathy, go to the depth to find out what is below someone’s surface-level because sometimes we don’t someone’s whole story. Life is about others. D) Everyone can coexist if we always lead with respect. How you treat one person is how you treat every person.
Charity Matters: How has this journey changed you?
Hal Hargrave Jr.: On July 26th, 2007 the morning of my accident the person that I was was driven by dollars and cents. It was all about how I was going to school for me, how I was going into the business school to make money for me, how I was going to make money for myself working for the family business, how I was on a baseball scholarship for me. Everything was me, me, me, me. Today that me word or I word is never used. Today I live for others before myself.
Like all good fairy tales, it begins with once upon a time…there was a beautiful woman named Jennifer Hull and her heart was so huge that she not only adopted one child but created a non-profit to help hundreds more sick children at children’s hospitals around Los Angeles. Jennifer and I have known each other for a while and a few years back I interviewed her about their incredible cause called Once Upon a Room. A non-profit organization that decorates rooms for children who have long stays in the hospital.
Since that time, Jenny’s daughter Josie, Josie’s best friend Sienna, my son and host of amazing high school students have brightened hundreds of children’s hospital rooms with their work. Now that my son is heading to college in Texas he and his buddies are bringing Once Upon a Room to their local Children’s hospital. This week I thought I would share the magical fairy tale once again…because like all good fairy tales we want to read them over and over.
Charity Matters: Give us a little back round on you and Josie?
Jennifer Hull: A little history about Josie and I…I am the very proud, adoptive mother of Josie. Josie and her sister, Teresa, were born in Guatemala and were conjoined at the head. They came to the US at 9 months old. At 1 year old they underwent surgery done by a 50 person medical team to separate them. After 23 hours in the operating room, our two beautiful girls were rolled out in 2 separate beds.
We were granted a miracle that day and have spent every day since trying to do everything in our power to better the girls’ lives and those around us. As one can imagine our medical journey did not end at separation surgery. There have been countless hospital stays with over 30 surgeries combined and hours upon hours of physical therapy.
We know from first-hand experience when you are in an environment that makes you happy and calm healing is easier to achieve. It was important to Josie and me to help others in medical situations feel better. The main portion of our program is to decorate hospital rooms for pediatric patients going through active medical treatment.
Charity Matters: What was the moment you knew you needed to act and start your non-profit?
Jennifer Hull: Once Upon a Room has a tag line…Every child has a story. My sweet daughter, Josie spends so much time in the hospital. Every time we are inpatient, I noticed her spirits were lifted when we would bring in items that were ours and set up a mini “house” like atmosphere. We have had the pleasure of meeting other patients and families over the years and when we would visit them we would bring something to brighten their room we could see the joyous effect it had.
We wanted to expand our reach and really transform the hospital setting into a personalized, happy environment. Josie and I got excited about the possibility of spreading joy to others in the hospital. We knew we needed to do this. We wanted to serve others and this was such a perfect fit for us.
Sienna, Josie and Ford
Charity Matters: Who along the way has helped you make this journey happen?
Jennifer Hull: Siena Dancsecs is a huge contributor to our success and is one of Josie’s best friends and has been through so many ups and downs with Josie medically. Siena’s passion to help others started to light on fire. At 11 years old she called to tell me that the organization should be named Once Upon a Room. She said that our mission should be to serve pediatric patients in and out of the hospital that was inactive medical treatment.
Siena says, “Through my friendship with Josie I wanted to do more. We do what we do because we can see the long-term impact it makes. I remember getting asked to go to the hospital for the first time. I honestly had no idea what to expect, what I would see or what I would hear. Normally when I think about a hospital I think about all of the needles, medicine and doctors. We get to see a different side of it. When we walk into those rooms we get to brighten this patient’s room with what they like. It becomes all about them in a different way. It’s not all about their disease or injury; it’s about them as a person. That’s what makes it so special. Getting to make these patient’s days just a little bit brighter. And truly it affects not only their environment but also everyone around them. It brings this glow to their surroundings, helping them start fighting a little harder.”
Charity Matters: What fuels you to keep doing this work?
Jennifer Hull: This is an easy question…making other people happy!! As Josie says, “We do this to make other kids happy. I know how hard it is to be in the hospital so I want to help them too.”
We can’t change the medical outcome but we can change how they feel when they are going through this journey. You can’t believe how rewarding it feels to know that you put your heart and soul into doing something for someone else that hopefully makes a difference in his or her life. Every room we do we put ourselves into their shoes for a moment. We do our best to anticipate what they would want or what would bring joy to them.
When we get the theme of the room we try to do the best we can to make it perfect for them. You would think after doing over 500 plus rooms it would be redundant but instead, we try to make each room better and more personalized. Making someone else happy fuels us. Hopefully, that person is the patient, but also the family. Being in the hospital is so stressful for the whole family.
We are one of the few people who walk into the room and can concentrate on the person, not the medical diagnosis. We get to recognize them and their interests. The family gets to be reminded of theperson, not the condition.
The other part that fuels us is the excitement that it brings to the medical staff. You almost see them invigorated. It is so much fun to watch them and their reactions when they are watching a room reveal for one of their patients that they clearly have compassion for. It is a gift to us to make others feel special.
Charity Matters: When do you know you have made a difference?
Jennifer Hull: There is an interesting thing that happens in our group. It isn’t only the patients and families that we affect. Many times it is the volunteers or vendors that we see affected by our work. It is so much fun to go into Target and the cashiers are all excited to see what rooms we are shopping for. It is so rewarding to see the change in our volunteers when they come to help.
Witnessing the love and compassion that kids and teens give to patients is one of the best gifts in my life. We don’t give them enough freedom or opportunities to give to others in a meaningful way. Giving them a positive experience serving others at a young age while hopefully help them remember that feeling when they are adults and they will find a cause that they can make an impact giving to as adults.
Charity Matters: Last question before we end this fairy tale, tell us what success you have had?
Jennifer Hull: Our success isn’t measurable. Success for us is determined by the about of love and compassion we are able to spread to our patients, families, staff, volunteers, and vendors. It is the ability to spread hope and happiness. Our success is based on helping and serving others.
Now that is happily ever after….if ever I have heard one.
Have you ever had a friend that keeps telling you, “you need to meet so and so.” Well, a friend of mine has told me for years that I needed to meet her friend, Marcella Johnson, who is the founder of the nonprofit The Comfort Cub. The stars finally aligned and we had a conversation last week that was supposed to last for forty-five minutes and when I looked at my clock and saw that two hours had passed I was in awe. She was beyond worth the wait and such an inspiration.
In 1999, Marcella’s fourth child, George died shortly after he was born from congenital heart disease. Marcella used her grief as fuel to help others who were suffering from broken heart syndrome and trauma in her creation of the nonprofit the Comfort Cub.
Charity Matters: Tell us a little about what The Comfort Cub does?
Marcella Johnson: The Comfort Cub is the world’s very first weighted therapeutic teddy bear. After I lost my newborn son George in 1999 due to congenital heart disease we developed the Cub to help other mothers who suffered from the loss of their infant. The Comfort Cub is specially weighted and is intended to simulate the weighted comfort of cradling a newborn. While the initial intent of The Comfort Cub was for child loss, research now shows it provides profound relief for any traumatic event. This includes having to leave the hospital while your baby is still in the NICU, the loss of a spouse, parent, loved one or beloved pet. It has also been effective for occupational & autism therapy, adoptions and those experiencing divorce or traumatic loss. Due to deep touch pressure, holding The Comfort Cub triggers the brain to release the neurotransmitters dopamine, serotonin and oxytocin, which causes the body to relax and feel comforted.
Charity Matters: What was the moment you knew you needed to start The Comfort Cub?
Marcella Johnson: Leaving the hospital empty handed, with nothing in my arms was one of the worst parts of the whole experience of losing a child. It was doubly heartbreaking because when it was time to be discharged my husband took all my things and went to get the car. I was in the elevator next to a woman both of us had just delivered and she had balloons, flowers, her baby boy and I had nothing to hold, it was so painful. Then when we were both wheeled outside to pick up her husband has the video camera, the balloons, and the joy. I just wanted to die. Then my husband pulled up and to see his pain looking at this happy new family was so hard, watching him suffer. We just drove off in silence.
What happened when we got home was that the emotional pain felt like an open wound. My chest literally hurt and my arms ached and no massage or Tylenol made it go away. There was a dull ache in my heart and I thought I was losing my mind. Twenty years ago people didn’t know about Takotsubo Syndrom, also known as broken heart syndrome, but research eventually proved that I wasn’t alone.
A week after the funeral I asked my dad if he would meet me at the gravesite and he had this beautiful pot of flowers to leave at the grave. When I held the pot the aching in my heart and arms went away. I was sure I was losing my mind. Then I began doing my own research on grief and discovered women who were grieving would hold sacks of flour or carried a pineapple wrapped in a blanket and realized that the pot was about the weight my child would have been.
I had asked people to donate teddy bears instead of flowers in baby George’s name that we would bring to the local Children’s Hospital. We had a lot of teddy bears and about four months after the funeral I saw a Build a Bear and I went to the manager and told him my story and that I wanted to try to create a comfort bear for other women like me. He told me he would help me after work and to go and buy all the split peas that I could find. We opened up the bears and filled them with 6.7 lbs of lentils (baby George’s weight) until we got the weight just right. The following year we started the organization because I was determined that I am not going through this in vain and if I can help just one other woman than I will be satisfied.
Charity Matters: Tell us a little about How you started The Comfort Cub after the prototype?
Marcella Johnson: Helping to me is second nature. I wanted to make sure that no woman in San Diego left the hospital the way that I did. My husband and I started a fund with the money that we would have spent on baby George. So instead of the money to buy diapers and formula, we bought teddy bears, ribbons and spilt peas. A hospice organization asked for ten bears and the Children’s Hospital asked for twelve. I got my girlfriends together and we started an assembly line.
I realized early on that this doesn’t belong to me but I am simply a steward of this. The way people have responded to this bear is so much bigger than me. The reaction from parents and people who have gone through trauma has been so inspiring. Unfortunately, when there has been a tragedy we have sent the bears. My sister lived near Sandy Hook and showed up at the office with the bears. The office manager said they had received 60,000 teddy bears and didn’t need another bear. When she told my story the office manager said she would hand deliver each Comfort Cub to tall of the parents of Sandy Hook victims. Then the parents of the teachers who were killed at Sandy Hook Elementary requested the bears. We made three hundred cubs for the grief group of the Vegas tragedy and just this past week we delivered bears here in San Diego for the recent shooting at the temple.
Charity Matters: What are your biggest challenges?
Marcella Johnson: Our biggest challenge is to get people to understand. Twenty years ago people didn’t know about the physical effects of grief and Takotsubo Syndrome. People can sometimes feel overwhelmed by helping women who have lost children and they either get it or they don’t. The Comfort Cub isn’t about sadness but about hope and healing. People are much more interested in talking about trauma than death. Why it is uncomfortable for many of us to try and find the words for people who lost someone we can not turn our backs on those who are suffering.
There have been times when this work has been hard. When the economy changed and we had the financial crisis in 2008 funding became more challenging. I had three other children, was making the bears, distributing them and it was a lot. We had a Comfort Cub hotline where we offered them for free to anyone in the United States who had a need. The San Diego Hospice group ran the hotline and funded much of the program in the beginning until a few years ago when they closed down. In 2013, I officially started running everything and in 2015 we became our own nonprofit.
Charity Matters: What fuels you to keep doing this work?
Marcella Johnson: This work is internal and in my heart. It is in my soul and I feel called to do this work. There are so many people that are grieving out there and we need to help them. I believe that I am supposed to be doing this work.
Charity Matters: When do you know you have made a difference?
Marcella Johnson: There are so many ways….I hear from the hospital all the time the comfort and peace the cubs give to so many. The people who write on our Facebook page about what an impact the cub has made. I find out second hand because I do not directly distribute the comfort cubs. However, a few years ago I received an award and they brought out a woman who had lost a child and she was carrying something that looked like the velveteen rabbit, it was so worn and loved. I realized as she began to speak about what the comfort cub had done for her that she the loved thing she as holding was her comfort cub. It is just wow to realize the difference we have made and it takes your breath away.
Charity Matters: Tell us what success and impact you have had?
Marcella Johnson: Since we began we have given over 15,000 Comfort Cubs. So often we learn that these cubs are usually passed on to at least three people. People want to give their cub to someone else who is hurting and now needs it. When you do the math that is touching almost 45,000 lives. I have a friend who is a nurse practitioner and she was recently doing a physical exam. The woman undressed and had a comfort cub tattoo. My friend asked about her tattoo and the woman explained that she had lost a child and that the comfort cub literally saved her life and she wanted it tattooed to always have it with her. That was an impact that I never expected.
Charity Matters: What life lessons have you learned from this experience?
Marcella Johnson: Before losing a child I always thought it was best not to mention a person who has died’s name. I have learned that you do not want a loved one to be forgotten. I make it a point to always tell people that whoever they lost, mattered. Also, the more you can do to help someone who is grieving the better, it doesn’t have to be anything grand but just to let them know you care.
Charity Matters: How has this journey changed you?
Marcella Johnson: My son’s passing changed my life forever. I wanted to know when he died where did he go? Where is my child? His death sent me on a quest to know more about my faith. It made me realize that we are not in control of anything. Life is short and we need to enjoy and celebrate all the goodness in our lives. Let’s go to the birthday parties, let’s go to the graduation parties and see our children in their plays. You need to tell people who are meaningful in your life that you love them and what they mean to you because it is fleeting. This is my journey and this is my life….
Charity Matters.
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“Sometimes you will never know the value of a moment until it becomes a memory.”
Dr. Seuss
Almost a decade ago I made the most amazing friend through a wonderful happenstance. I was filming a fundraising video for my alma mater and the filmmaker, Noah Applebaum, was so talented, compassionate and smart that I asked him to help me with another nonprofit project, and then another and then another. Through the years Noah’s heart has shown through in a multitude of nonprofit videos we have worked on together and our friendship has been a wonderful gift. Last week Noah told me about this incredible documentary film that he is now fundraising to make for an Alzheimer’s program called OMA, which stands for Opening Minds Through Art.
Noah’s late grandfather had gone through the program and Noah wanted me to meet the nonprofit’s founder, Dr. Elizabeth Lokon. We had an incredible conversation and it became abundantly clear why Noah wants the world to know about this remarkable woman and her journey to give the elderly an opportunity to express themselves through art once dementia has left them without a voice. If anyone can tell their story it is Noah. Talking to Dr. Lokon was beyond inspirational and a privilege.
Charity Matters: Tell us a little about what OMA does?
Dr. Lokon: Opening Minds Through Art (OMA) is an intergenerational art making program for people with Alzheimers disease. The program provides opportunities for creative self expression for people with dementia.
Charity Matters: What was the moment you knew you needed to start OMA?
Dr. Lokon: I had my Master’s Degree in Fine Art and got my PhD in 1997. I had been teaching teachers in Japan from 2000 to 2006 and I had a student club called MICA where we did service for a number of causes. We cleaned beaches, bought toys and were very involved with an organization that prevented sex trafficking of Cambodian children through education. When my husband retired he said to me, “What do you want to do now? Our kids are grown.” I knew that I wanted to go back to school to make a difference and that my primary goal was to live a life of service.
In education I learned about the first half of life but I knew nothing about the second half, so I decided to study Gerontology. When I came back to the U.S., I moved into a nursing home to learn a new culture, it was like a whole new world and I approached it like an anthropologist. Then I saw people with dementia. They were kept clean, safe and ignored. They were zombies.
As an educator I knew this was not fair. Children have programs and advocates but with older people there is no one to speak for them. Even with dementia people can have joy. So, I went back to school and worked with a theater program that was for people with dementia. The program used photos to trigger memories to tell imaginary stories. So, in 2007 I asked if I could intern and I moved into a nursing home.
I quickly realized that art was a way of connecting with the patients, like the theater program. Verbal skills may have been impaired but people with dementia could flourish if there wasn’t any language, they could paint. In 2007, I had the idea for OMA.
Charity Matters: Did you grow up in a philanthropic Family?
Dr. Lokon: No! I did not. I am Chinese but grew up in Jakarta, Indonesia. When I grew up there was a large gap between the wealthy and the poor. I had to walk through the slums to get to school and I remember on my way home from school as an 8 year old bringing younger children home from the slums just to be bathed.
Charity Matters: What are your biggest challenges?
Dr. Lokon: Funding. While we are funded under the Scripps Gerontology Center, an Ohio Center of Excellence at Miami University.Scripps Gerontology Center, an Ohio Center of Excellence at Miami University for operations, the biggest challenge is trying to plan our work and the expansion of our work with extreme financial variability . The other challenge is that I know that our program works and we want to expand our work to other medical schools. We want them to be able to have OMA training. I want to give schools the opportunity to train students to be better health care providers. We need to create awareness to fund this work and it takes a lot of time and effort to make this happen.
Charity Matters: What fuels you to keep doing this work?
Dr. Lokon: I continue to go to a site each week and I see the magic happen and it keeps me grounded and going.
Charity Matters: When do you know that you have made a difference?
Dr. Lokon: Students realize that it is a privilege to be with someone vulnerable with dementia. Students change and see a shift in themselves. The students begin to see themselves differently and value themselves. I know I have made a difference when I see a student put their arms around their partner with dementia and I see the connection between the two. From a distance you cannot tell that that there is dementia because the old and young person look “normal” and that is the power of human connection.
The patient feels normal and in return the student knows they have made a difference. This is something special. The students write in their journals about their experiences and you know you have made a difference.
Charity Matters: Tell us about your impact at OMA?
Dr. Lokon: We began the program in 2009 and since that time we have trained over 2,00o students from Miami Ohio alone. We have 150 locations in the United States and Canada that are using our program and are serving eight retirement programs locally. We are currently working with ten universities and their medical/nursing schools to ensure that their students know how to treat those with dementia and communicate with them. When I think of the ripple effect of just the 2,ooo plus students who become kinder to people with dementia. People who no longer dismiss the elderly, students who are more respectful. I think the measure of success is a cultural change within the aging world, one student at a time.
Charity Matters: What life lessons have you learned from this experience?
Dr. Lokon: I have learned there is value to everyone in any stage of life regardless of age, condition or disability. There is a reward in seeing that value and in making a human connection. I have learned the importance of social connection and seeing everyone as worthy of your time, attention and love. In the end, it is just what it means to be human.
Charity Matters: How has this journey changed you?
Dr. Lokon: This journey has changed me by making me more aware of the deeper purpose of what it means to be together. What it means to connect and how much is really happening in that connection. We are so busy meditating and going to yoga that we are depriving ourselves of the very substance that makes us whole.
Charity Matters
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