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The Importance of Community

I’ve been thinking a lot about community lately. More importantly, I have been wondering what is happening to our communities? Our country was founded on taking care of your neighbor. Being an active member of our towns, schools, churches and being there for our neighbors. Our communities once were our foundations. At the core of nonprofits is community. Places where we all have a common goal that is about caring for others above ourselves. Healthy nonprofits create thriving hives of activity where all the members work very hard to support the members of their group. Healthy communities do the same. Lately, it seems that our communities seem to be suffering. As a result, our world is too.

the importance of our local tribes

In August, I spoke with Bob Dalton of the Love Your City Podcast about the importance of staying local. We discussed why the grassroots work that our local nonprofits do to help others in their community is so important. It’s not to say that huge national organizations are not important. Rather, we need to not lose sight of our local needs and care for those in front of us first.

Then last week, I spoke with Barry Braun of Happy Community Builders. Barry spoke about how we as a human species began and stayed in tribes for thousands of years. In those tribes, there wasn’t hunger or homelessness. The reason is that the tribe insured that everyone was cared for. I can’t stop thinking about that conversation. Somewhere along the way, we became more concerned with ourselves than with our tribe. In addition, we became more concerned about the global community instead of the one we live in.

The Benefits of helping your community

What would our world look like right now if each one of us took care of our own local tribe? If we were actively involved with helping those in our own communities with jobs, food, education, support? If everyone supported each other at a local level the need for global support wouldn’t exists. This may seem like an oversimplification and perhaps it is. When you think about it, which I can’t seem to stop doing, it makes sense.

Community makes us feel connected. It makes us feel safe. Our mental health is stronger because we have that feeling of belonging to a group. Community gives us that safety net that tells us someone is looking out for us. However, today people look to the government for that feeling rather than next door. We live in neighborhoods where we don’t know our neighbors. Do we know the name of the people who work at our local market? These tiny threads of kindness are what strengthens the fabric that keeps us together.

What happens when Connections erode?

When these threads are cut our connections erode. Then isolation sets in which is usually followed by fear.  Sadly, the result of fear brings the innate need to self protect rather than the need to reach out to others. We become overwhelmed and shut down. That fear can erode so much goodness. We lose faith in one another and distrust becomes a cancer that destroys connection.

As humans, we are meant to be connected, to support one another like bees in a hive. We all have a job and a role to make our communities stronger by working together. Fear robs us all of the honey and the sweetness of feeling connected. But where and how do we start to change this?

What can we do to make our world better?

What are we to do when the news tells us the sky is falling? First, turn off the news! Secondly, we all need to take baby steps towards knowing our neighbors, teachers, grocers and the people in our communities. We need to strengthen our neighborhoods by getting together. Support our schools and places of worship. Get involved!  If each of us takes these tiny steps to make our own communities stronger. As a result,  we become more unified. Ultimately, we make our world a better place one community at a time. It all starts with us.

CHARITY MATTERS.

 

YOUR REFERRAL IS THE GREATEST COMPLIMENT,  IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.

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The wait is almost over

The days are long and the years are short. That is exactly how I feel about summer. There are moments that the long hot days feel never ending and yet in the blink of an eye summer is practically gone. Some  schools are actually back in session! It truly is a wonder.

Summer is a crazy time for me, especially with TACSC. Our summer youth leadership programs are the pinnacle of our year.  As a result, Charity Matters takes a brief vacation. So thank you all for your patience. We are excited to launch Season Four of our Podcast next week and we have been busy these past few weeks gathering some amazing stories for you.

It’s hard to believe that we already have four seasons under our belt. We are so grateful for all of you who have subscribed  and left reviews, we are grateful for every last one! We had thought about launching Season Four today because it is National Nonprofit Day. 

What is National Nonprofit Day? It is a day set aside to recognize the immense effort nonprofits put into impacting their communities across the globe. We decided to give everyone another week to get settled and back to school. New episodes of Charity Matters  celebrating all the incredible humans who work tirelessly everyday to make your world better through the nonprofit organizations they create. It is all cause for celebration. So happy end of summer, happy back to school and Happy National Nonprofit Day!

CHARITY MATTERS.

 

 

YOUR REFERRAL IS THE GREATEST COMPLIMENT,  IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.

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Cancer

Melanoma, looking twice

Summer is in full swing and that means the sun is strong. I was recently at the dermatologist getting checked out. My visit reminded me of this conversation a couple years back. So I thought I would re-share it again today for all you sun lovers.

Growing up in LA, Marianne Banister was a familiar face on daily on our local ABC news station. She was always reporting from a storm, a flood, a fire…some sort of disaster. When a friend suggested that I reach out to interview Marianne, who now lives in Baltimore, I was a bit intimidated. Marianne and her husband lost their 17-year-old daughter Claire to melanoma.

Their family was determined to fulfill  Claire’s vision to provide clarity and hope in the fight against adolescent and young adult melanoma through their work at the Claire Marie Foundation. They are on a mission to ensure awareness, education, and prevention of cancer that has increased 250% in the last forty years.

Charity Matters: Tell us a little about what THE Claire Marie Foundation does?

Marianne Banister Wagonhurst: When this happened to our family, to our daughter, Claire, we were blindsided. The medical profession did not realize kids could get melanoma at this age. It looked different than adult melanoma and it was more aggressive and more invasive. According to pediatricians, melanoma is the number two, cancer in adolescence from 10 to 19 and the number one cancer in young adults from 20 to 29. This cancer is the number one cause of cancer deaths in young women 25 to 30. For young people, this disease is more aggressive and invasive than in older people.

We’re the only nonprofit in the country that focuses on preventing melanoma specifically in adolescents and young adults. We are not trying to treat it and we’re not doing research to find an answer to find the new drug or the therapy. Nobody’s helping to prevent it and that’s our job.

CMF Five Year Retrospective 2019 from Claire Marie Foundation on Vimeo.

Charity Matters: Can you tell us what the risk factors of Melanoma are?

Marianne Banister Wagonhurst:  If you wear sunscreen, if you wear up 50 SPF clothing,  if you don’t go to a tanning booth and if you advocate for yourself. That’s it, then you’re good. I want to add empower yourself to advocate and get at the front of it. Our whole goal is to get people in and connect them with a dermatologist. If you don’t already have a patient relationship with a dermatologist, it can take three to five months to get your first appointment. 

Charity Matters: Can you share some of Claire’s Journey?

Marianne Banister Wagonhurst: Claire got a routine skin exam at 13.  Every year we had them checked and had no history in the family. We had lived in Southern California and being a reporter I was aware of it. We went back six months later for her yearly exam. About a week before that the mole on her ankle that she was born with started to change. However, it didn’t look like what we’re educated to look at for melanoma. It wasn’t thick, it wasn’t dark. The borders were not irregular, none of that it just looked a little dusty gray in color. Unfortunately, it was a melanoma. 

About her junior year when we thought we were well past Claire said, “Mom, why do you think this happened to us?” I said, “Maybe being who you are because you’re so positive and energized. And being what I do professionally, you know, maybe we can do this together when you’re ready?” Claire said, “Yeah, when I’m a senior, then it won’t matter. And I can advocate.”  

She still was not quite there yet wanting to share her story. So we knew down the road, that’s what she would want to do. The bottom line is I just couldn’t sit here with this information and not warn other parents. If someone had raised the flag of awareness before us, then maybe she’d still be here.

Charity Matters: What was the moment you knew you needed to act and start Claire Marie Foundation?

Marianne Banister Wagonhurst:  We started with community support and  launched in October 2014.   Claire’s friends from her school wanted to help and do something.  One of her best buddies since childhood called me and said,” Hey, Miss Marion, do you have a logo?”  I was like, Why? I mean, we knew we were going to do something, but we are just trying to get through the grief and to deal with things.

Claire’s friends did this dance a THON and raised $24,000 called Moves for Claire. I didn’t know how many people my daughter knew.  There were 500 kids there and they had sponsorships. We realized they’re listening and paying attention now, so we need to take advantage of this. If we wanted to do this in her memory, we had to do it quickly. Her friends have been our biggest force.

So because of them we then went forward. We have collegiate ambassadors, who started the program.  They were in the high school class of 2015 and the college class of 2019. Almost one hundred of them are now  on 46 campuses. Each of them are doing peer to peer education, mentoring and awareness programs.

My husband cycled 620 miles to symbolically take her to college. Claire was accepted to college just a couple of days before she passed. So she got accepted to Georgia, Southern University, Alabama. So he cycled from Charleston to Georgia Southern into Bama. We did this big media raising campaign and because it was a football game that she promised her dad he could go with her. It was a way of him to process it and honor her. In addition, it was a way for us to raise awareness. 

The kids came up with a lot of these ideas. Today, we have partnerships with US lacrosse and we work with the Melanoma Research Foundation. Our organization has been to Capitol Hill to campaign for funding and support for research. We are developing a partnership with Teen Cancer America. If a young person is going through cancer, guess what that puts them at elevated risk for melanoma.

Charity Matters: What fuels you to keep doing this work?

Marianne Banister Wagonhurst:  Claire. There’s never anything that’s going to make it right that we lost her. There’s never any sense to it. But I truly believe this is her purpose. If I don’t keep this foundation going and do the work that needs to be done, then I’m not fulfilling her purpose.  That means we would have lost her for no reason.

She has changed lives and she has saved lives. We have had a number of young people who have found melanomas early and they always tell me,” You know, I thought of Claire, and I went and got it checked and it was a melanoma.”

Charity Matters: When do you know you have made a difference?

Marianne Banister Wagonhurst: My husband always says if we save one kid, we’ve done our work. We’ve done that many times over. I think what I’m most proud of is we’re changing the narrative.  Because of us, many organizations are now creating a Young Adult adolescent melanoma focus.  In six years, we’re starting conversations, and making people understand that it’s just not a matter of putting on sunscreen, and calling it a day.  It’s elevating the importance and value that young people are getting this disease to the rate they are and that it is not rare.

Charity Matters: If you could dream any dream for your organization, what would that be?

Marianne Banister Wagonhurst:  The dream would be that every young person from two-years-old on should incorporate full-body dermoscopy-based skin screenings every year, as part of their WellCare. When they go to their pediatrician and their eye doctor and their dentist, they see the dermatologist, they get checked, that becomes part of their routine.

 We just don’t want anybody else to go through what we did, because it’s so darn preventable. When you think about it, melanoma is one of the cancers that you have the best odds of seen visually externally on your body. A screening takes 10 minutes.  You don’t have to drink anything, don’t have to get an MRI and you don’t have to get a CAT scan. All you need is 10 minutes with a dermatologist with a scope. 

Charity Matters: How has this journey changed you?

Marianne Banister Wagonhurst: I think one of the changes that surprised me is you get a different identity. You realize that you cannot go back to life as it was because it’s no longer there. So you have to recreate yourself. I’m in a different world.  So I’ve expanded the people in my life.

 I’ve had a lot of loss in my life.  I’ve always lived my life as you have to thoroughly embrace it each day as it is. My faith is stronger than ever because I know she’s fine. I know she’s okay. 

Charity Matters: What life lessons have you learned from this experience?

Marianne Banister Wagonhurst: We’ve been asked this by other parents often how we dealt with the grief. We just had to dig down to this just horrendous feeling and we had to feel but then able to come out the other side. And it seems like to me that at some point of grief you have to process this pain. I think for me because I always remembered that conversation we had about Claire helping others, I know she would be proud of this.  

It’s not that you ever want this to happen, but if it does, to know that something has been inspired by her in a positive way. That’s what we look at.  Our daughter is having a great impact because of what we’re doing and that’s the best we can do for those we love.

 

CHARITY MATTERS.

 

YOUR REFERRAL IS THE GREATEST COMPLIMENT,  IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.

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Voluntourism in 2022

It’s summertime and with that means travel and family trips. It seems that summer gets shorter every year and that means a very small windows for travel. I’m not letting that slow me down but rather am already beginning to plan for next year.

Our youngest will be graduating from college and it seems like the perfect time for a family trip that involves voluntourism or volunteering and travel. Since I have begun my research I thought I would share it with you. My first stop was a web-site chock full of information called Voluntourism.Org where you can learn about hundreds of opportunities and how to plan your trip.

Pre-planning check list:

A few things to keep in mind in the planning stages of your trip.

1. Do your homework

2. Ask yourself and your family what do you really want to achieve from this experience? Help others? Bond with your family? Get into a great college?

3. Choose a reputable organization to partner with

4. Involve your family in all the pre-planning process.

5. Document the experience with video, photos and journals.

There are thousands of online sources promising you and your family amazing experiences but finding reputable ones can be overwhelming. Here are a few volunteer programs that had some great endorsements:

Volunteer Programs to consider:

1. Global Volunteer Network

2. Cross Cultural Solutions

3. Rebuilding Together U.S. based program that builds homes across the country

4.  Pack for a Purpose

5.  Peace Jam

6.  Projects Abroad

There are also organizations that would love to have you visit learn about their mission, and volunteer to help further a given cause.  The downside is that you will have to do the investigation yourself by reaching out to organizations individually.  This can be a daunting task and challenging from a booking perspective. It can also be rewarding if you have a charity, organization, or cause you want to devote your time and efforts too.

Ecotourism is incredibly popular so if you are looking for a trip that involves working to save the planet or a species here are a few suggestions:

Ideas for Ecotourism travel:

1.  GoNomad

2.  Transitions Abroad

3.  GoAbroad 

4.  GoVoluntouring

5.  GoEco.org

So whether you go now or next year, travel near or far….know that your time is your greatest gift. Think about sharing that precious resource with your family in helping another. Those are the moments that make an impact on all involved.

CHARITY MATTERS.

 

 

YOUR REFERRAL IS THE GREATEST COMPLIMENT,  IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.

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Charity Matters Inspiration

Pick up the Six

Ten years ago when Charity Matters began there were not many people telling the stories of service. At that point in time, I didn’t think there were any. It turns out that across the country in Raleigh, North Carolina there was someone else who had a similar idea. His name is Brian Jodice and he is the creator of the Pick Up The Six Podcast.

Brian and I were recently connected and I learned about his work at Pick Up the Six. In the military, the  term
“six” refers to behind you. In a group of runners picking up the six means to turn around and get the person trailing behind you. Brian’s mission is service before self and he uses his platform to tell the stories of men and women from all walks of life doing just that. Last week, it was a privilege to be a guest on his podcast talking about service and just how good people are.

So today, I thought I would share our conversation above and introduce you all to a new audience of amazing humans who serve. Brian interviews everyone from police officers, first responders, community heroes, and occasionally nonprofit founders too. So if you get a minute, please take a few to check out his podcast Pick Up the Six here. As Brian and I discussed the more people like us who focus our attention on all the good happening in the world, the greater the positive spiral up will be. 

When we all come together and put service before self, we make the world a better place. One person, one podcast, one conversation at a time.

 

CHARITY MATTERS.

 

New episodes are released every Wednesday!  If you enjoyed today’s episode, please connect with us:
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National Volunteer Week 2022

“A volunteer is a person who can see what others cannot see; who can feel what most do not feel. Often, such gifted persons do not think of themselves as volunteers, but as citizens – citizens in the fullest sense; partners in civilization.”
President George H.W. Bush
Founder, Points of Light

It’s back and it’s here! No, not taxes, something much better…National Volunteer Week! Who knew that next week is National Volunteer Week? In case you missed the news, consider yourself informed.  We thought we would share a few days early so you can start to plan ahead.

National Volunteer Week was established in 1974 by the  Points of Light Foundation.  This special week has grown each year with thousands of volunteer projects and events scheduled for the week. The week is all about inspiring, recognizing, and encouraging people to seek out imaginative ways to engage in their communities. It’s about showing that by working together, we can do anything. National Volunteer Week is about taking action and encouraging people to be at the center of social change – discovering and demonstrating their power to make a difference.

If you don’t know where to start, take a peek at one of my favorite sites, Volunteer Match.org. You just type in your zip code, what you love to do and it will match with an organization that can use your help, in your community. Another option is Project giving Kids if you are looking for opportunities for you and your children to volunteer together. Listening to the Charity Matters Podcast for great causes and ideas is another idea. Shameless plug, I couldn’t resist!  In addition, next Friday, April 22nd is Earth Day so maybe you can do an environmental volunteer project next weekend, the opportunities are endless.

Think of National Volunteer Week as an opportunity to shine a light on the people and causes that inspire us to serve. Each year twenty-five percent of Americans volunteer, which is 62.8 million people! They average about 32 hours per person, per year according to the Corporation for National Community Service, which comes to 7.9 billion hours of service or $184 billion dollars. 

I hope this week finds you inspired to be an active part in a cause you care about, in your community, helping a neighbor, or meeting new friends volunteering. It is people like you, the power of volunteers who build stronger communities and a better world for us all.

Happy Volunteering!

 

charity Matters.

 

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Charity Matters Inspiration

The state of things

I know it has been a while since I have shared my thoughts. The podcast has been so well received that I haven’t stopped in a while to reflect on the state of things. I don’t know about you but turning on the news lately scares me. The state of things does not seem terrific these days. This is not a political statement but simply how I feel.

When there is war, there is fear. That fear can erode so much goodness. We lose faith in one another and distrust becomes a cancer that destroys connection. As humans, we are meant to be connected, to support one another like bees in a hive. We all have a job and a role to make our communities stronger by working together. Fear robs us all of the honey and the sweetness of feeling connected.

The pandemic did a lot to destroy connections and break down our hives. The election before that didn’t do our communities any favors either. We talk about our friends and families differently now because of their politics. Something that has never happened in my lifetime. Rather than coming together to discuss where we are similar, we write people off because they believe differently.

If bell curves are a real thing, and I believe they are then we are all actually in the middle together. Somehow, the media has us all playing tug of war at the bottom of those bell curves with CNN on one side and FOX on the other. We should be working together not pulling ourselves apart.

We are afraid. The thought of a nuclear war is seriously scary. We are nervous about gas prices, inflation, crime,  our safety and these are real and valid reasons. These fears are reasons to lean into the hive because we need each more than ever. The fear is an opportunity for each of us to help one another not pull away.

Last week at dinner with friends, our waiter asked us if we would be open to rounding our bill up to four dollars more because the restaurant was matching up to one million dollars for a nonprofit supporting Ukraine. We were splitting our bill three ways and asked if he could add fifty dollars apiece. The waiter got on his knees at table height and looked like he was going to cry and said, “Thank you.” I asked him where he was from and he replied, “Kyiv.” He told us his father and brother were fighting and his sister and mother were trapped and trying to get out. Our waiter was so touched by our little gesture and said, “Thank you for reminding me how good people are.”

He is right, people are good. We see it in the brave Ukrainians, in the Polish people’s generous welcome, and in the generosity of so many supporting the millions of refugees. When the state of things is bad, it is our time to rise up and be good. To help another, whether a neighbor a friend, or a stranger in Ukraine. It is the only way the state of things gets better when each of us becomes our best. When we come together we can all make life sweeter in our hives.

 

CHARITY MATTERS.

 

 

YOUR REFERRAL IS THE GREATEST COMPLIMENT,  IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.

Copyright © 2022 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

 

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Episode 34: Saving Tiny Hearts

February is heart month. Heart disease kills over 659,000 people in the United alone each year. In addition to that 40,000 children will be born with congenital heart disease (CHD) this year alone. When Francie Paul’s son Joshua was born with CHD she and her husband Brian decided to make a positive impact for their child and so many others. They founded the nonprofit Saving Tiny Hearts. A nonprofit organization that is determined to put an end to Congenital Heart Disease, which is the number one birth defect of children

Francie was one of my very first interviews over a decade ago and her story and work have continued to inspire me. I recently had a chance to reconnect with Francie and her board chair Dr. Larry Kluge to discuss the incredible work Saving Tiny Hearts is doing. If ever there were two humans with huge hearts to mend all the broken ones it’s Francie and Larry.

 

Here are a few highlights from our conversation:

 

Charity Matters: Tell us a little about what Saving Tiny Hearts does?

Larry Kluge: Every day, we’re looking to raise as much money as we can to fund as much research as we can. Nearly every dollar we raise goes to support research. Recognizing how important it is that difference in raising money for research makes in the lives of children. We’ve already found that that was the case, in terms of many of the projects that we have funded have actually changed and improved the lives of children born with congenital heart defects. This is what Saving Tiny Hearts does.

Charity Matters: What was the moment you knew you needed to act and start  Saving Tiny Hearts?

Francie Paul:  On August 11, 2005, we had our first child, a beautiful baby boy named Joshua Bennett Paul. My pregnancy was “normal” and the doctors reported nothing “remarkable” about it.  Four hours after his birth, Joshua was rushed from the local hospital to Children’s Memorial Hospital in Chicago. Joshua was diagnosed with Severe Complex Congenital Heart Disease.

Like many parents in the same situation, we became very angry and considered litigation as a course of action. After meeting with high-profile medical malpractice attorneys, we decided this course of action was not for us. In the elevator on the way out of the attorney’s office, we called Brian’s corporate attorney to find out how to start a public charity. We wanted to channel our energy into something positive instead of negative.  On September 1, 2006, the United States Internal Revenue Service officially recognized the Saving tiny Hearts Society as a tax-exempt 501(c)(3) organization

Charity Matters: What are your biggest challenges?

Francie Paul: Our challenges.  I have a good friend who said it’s her first instinct not to talk about it. And I always say, if we don’t talk about it, the world won’t know that our kids need help. Right?  They cannot yet fix what Joshua has. So I need medicine to catch up faster than what we’re doing.  I wish people knew that the research we fund could save their aunt’s life,  their mother’s life, and could save their life

 Joshua’s heart surgeries are a direct result of ongoing research. There are not yet adult survivors that have had his heart surgery versions. So like every year is a blessing and every year is also a race against the clock for me. I feel like I could shout to the world and say, “Everybody if you knew how much of your money directly goes to the scientists that our medical advisory board decides?” They only pick what is most worthy for Saving Tiny Hearts grants.  If people knew that their money went to actually change the world, by changing medicine and science. How remarkable the future could be.

Charity Matters: What fuels you to keep doing this work?

Larry Kluge: Our motivation remains the same year after year, month after month, day after day, as we struggle to get the word out and raise those urgently needed funds to support more and more research that will ultimately save the lives of children born with CHD.  Our work has just begun and will continue until we can eradicate CHD.

Charity Matters: When do you know you have made a difference?

Francie Paul:  I can but I can share a quick story about a boy. His name was Gray. He collapsed on a hockey rink, and from sudden cardiac death. And it just so happens that one of Joshua’s CV surgery nurses was there. So she ran and people were trying to do CPR. She said,” Call 911 Get me the AED.” She did CPR on him using the AED and saved his life.

We had Gray come to our gala and it happened to be his high school homecoming, so he brought his date. Gray got up there at our gala and said, “You know, I’m one in a million kids this happens to.”  That night we also had a doctor come up whose research we funded. And the doctor said to Gray, ” You’re not one in a million. This happens more than you realize. But I’m coming up with a study that will prevent it from happening to kids just like you.” 

Charity Matters: Tell us what success you have had and what your impact has been? 

Larry Kluge: Success is continuing since 2006 on our mission to fund life-saving research.  Sixteen years have gone by and we are still here committed to raising funds to support life-saving research.  Our Medical Advisory Board continues to review and evaluate all the grants that we receive year after year and determines which ones are most worthy of our funding efforts.  We have raised over 6 million dollars and funded 60 research projects.  Many of the research projects funded have already made a difference in the lives of children born with CHD.  Not only children but today after funding the development of a heart in a lab, an adult has received the first heart transplant from a pig which stemmed from research we have funded.

Charity Matters: If you could dream any dream for your organization, what would that be?

Francie Paul: To eradicate CHD.  To have a world filled with healthy children never to be born again and suffer from CHD.  Live long and healthy lives without fear or restrictions.

Charity Matters: What life lessons have you learned from this experience?

Francie Paul:  It’s been a humbling journey. And I think, through those moments of heartache, you see the goodness in people.  I think you see the goodness and the true heart and passion in people.  When somebody raises money for research for us, and my baby was given a chance… And I can only dream about what the future will be like because of everybody’s helping everybody.  Really when everyone comes together it is just the best. And just, I feel like the best is yet to come. And for lack of a better way of saying it, I only dream for it to only be bigger and better.

Charity Matters: How has this journey changed you?

Larry Kluge: Recognizing how fortunate we are and how we can be of help to others is what we strive for day after day. My personal commitment is to make a difference in someone’s life every day.  To put a smile on a child’s face, to make someone laugh, or just bring some cheer and hope to another individual is what life is all about.  Making a difference.

CHARITY MATTERS.

 

New episodes are released every Wednesday!  If you enjoyed today’s episode, please connect with us:
YOUR REFERRAL IS THE GREATEST COMPLIMENT,  IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.

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Cancer

The Real Heroes of 2021

As we get ready to say goodbye to 2021, I wanted to take a moment to look back at what we accomplished at Charity Matters this year. Last January we launched our podcast, which in itself was a huge accomplishment.  In the past year, we have interviewed 31 extraordinary humans. Each story was a lesson in faith, resilience, courage, and compassion. These amazing nonprofit founders are the real heroes of our world in their quest to make life better for others.

While I have adored every conversation this past year, a few stood out especially from Season Two. I thought before we take our holiday break to get ready for Season Three we would take a moment to share a few stories that really touched our hearts this year. So let’s look back at some of the real heroes of 2021….

Love Not Lost Founder: Ashley Jones

Ashley Jones is the founder of Love Not Lost. Ashley shares her journey through grief with the loss of her young daughter and her transformational experience from loss to creating a remarkable organization that provides family photoshoots for the terminally ill. Her honesty and candor about grief are anything but sad.  You will leave this episode inspired by the joy and purpose found from an unbelievable loss.

The Bumble Bee Foundation Founder: Heather DonaTini

Heather Donatini, aka Queen Bee of the BumbleBee Foundation. Heather and her husband Jason, established the Bumblebee Foundation in 2011 in memory of their son Jarren who was diagnosed with rare liver cancer at the age of three. Their mission is to inspire hope, faith, and the overall well-being of pediatric cancer families.  Heather and her husband work tirelessly to serve pediatric cancer families. She is a lesson in resiliency and faith. She is truly remarkable and the work they do is just as inspirational.

The Be Perfect Foundation Founder: Hal Hargrave Jr. 

I have been privileged to meet hundreds of truly amazing humans over the years. There are always a few that are so dynamic, charismatic, passionate, and wise that you can never forget them. One of those people is the remarkable Hal Hargrave. You may remember his story from a few years back. Hal was involved in a tragic accident that left him paralyzed fourteen years ago. He used that experience to serve others suffering paralysis with his nonprofit the Be Perfect Foundation. A conversation that is better than caffeine. If you have read Hal’s story and not heard his passion, you need to take a listen. Trust me, this will be a gift you give yourself today. The man is pure light and inspiration.

Pancreatic Cancer Action Network President and CEO: Julie Fleshman

I have to admit I was a little intimidated meeting Julie Fleshman knowing what a huge organization she and her team had built.  Under Julie’s leadership, PanCAN grew from one employee to 150. PanCAN has funded over $149 million dollars in research for Pancreatic Cancer and created a platform that has fueled incredible change for the Pancreatic Cancer community. Despite my fears, Julie was beyond amazing, passionate and so much fun to talk to. Join me to meet this inspirational leader and learn about her incredible journey in changing lives.

Raise The Barr Foundation Co-Founder: Lori Barr

Lori Barr is no stranger to inspirational seasons because much of her life has been based around her now-famous son’s inspirational football seasons. Lori is the proud mother of NFL Minnesota Viking’s outside linebacker, Anthony Barr. However, it is much more than his football career that makes her proud, it is Anthony’s work to serve others with their nonprofit, Raise The Barr that is truly inspiring. Lori Barr talks about her journey as a single mother to nonprofit founder and shares her story of raising Anthony as a young single mother.  Learn how they decided to give back to help other single moms finish their education and support their families. Lori is pure sunshine and inspiration. This is a conversation you don’t want to miss.

There are millions of everyday heroes all around us. These five are just a small example of the millions who work in the nonprofit space and give their lives to serving and helping others. Each person is a reminder for us all that we get so much more when we give. As we look back at 2021 and reflect on what we accomplished at Charity Matters, we find ourselves asking what more can we do for our neighbors and communities in 2022? Thank you all for being a part of this wonderful community of caring compassionate people. We are so grateful for you all and wish you a most joyous New Year!

 

If you enjoyed today’s episodes, please connect with us:
YOUR REFERRAL IS THE GREATEST COMPLIMENT,  IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.

Copyright © 2021 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

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Causes

Ways to help families in Kentucky

Growing up in Los Angeles, we really don’t think much about tornadoes. Yes, there are earthquakes but most people don’t worry about them because they catch us all by surprise. This past weekend, all of us were caught off guard by the extreme magnitude of loss in Kentucky and the surrounding states and counties from the devastating tornadoes. There truly are no words to imagine what these families are going through right now. One minute they were preparing for the holidays and the next moment they have lost everything.

As broken and sad as our country may be right now, one thing Americans have done since they arrived on this land was helping one another. It is in our DNA and who we are. I can think of no better time of year than now to lend a hand. I came across this list in USA Today and wanted to share it here. Maybe just donating a few dollars you have to help a family in need? Perhaps you want to help a family for the holidays or give that as a gift to someone you care about? I thought it was worth sharing with each of you, some of the kindest and most compassionate people I know. Please feel free to share it and thank you in advance for doing what we do best, care for one another.

West Liberty, Ky., March 19, 2012 –Little remains standing of this historic church in downtown West Liberty. FEMA is working with Commonwealth and local officials to remove debris and demolish condemned buildings. Photo by Marilee Caliendo/FEMA

A few ways to help …..

Team Western Kentucky Tornado Relief Fund 

Gov. Andy Beshear has established a fund to assist tornado victims and begin rebuilding. Donate at secure.kentucky.gov/formservices/Finance/WKYRelief or by sending a check to Public Protection Cabinet, 500 Mero St., 218 NC, Frankfort, KY 40601.

American Red Cross 

Visit redcross.org, call 1-800-RED-CROSS, or text REDCROSS to 90999.

Aspire Appalachia 

Send donations to [email protected] or PO Box 1255, Jackson, KY 41339.

CARE

The nonprofit based in Atlanta is partnering with Louisville’s Change Today, Change Tomorrow to distribute food, water, and cash vouchers to affected families. Donate to the tornado relief fund here.

Global Empowerment Mission

The disaster relief nonprofit based in Miami is sending trucks of supplies to western Kentucky, in partnership with Racing Louisville and Louisville City Football Club. Donate funds at globalempowermentmission.org/mission/kentucky-tornadoes/.

Global Giving 

The D.C.-based nonprofit has established a Midwest US Tornado Relief Fund at globalgiving.org/projects/midwest-tornado-relief-fund/.

Kentucky Counseling Center

The organization is collecting donations that counselors and social workers in Graves County will distribute to affected families. Donate at kentuckycounselingcenter.com/mayfield-fund/.

Kentucky Tornado Relief Fund 

The University of Kentucky College of Medicine has established a GoFundMe page collecting donations at gofundme.com/f/ukcom-student-effort-for-tornado-relief-in-ky.

Kentucky Volunteer Organizations Active in Disasters 

Visit kentuckyvoad.org/.

Mayfield Graves County Tornado Relief 

Mayfield-Graves County United Way has set up a GoFundMe to collect donations at gofundme.com/f/mayfield-graves-county-tornado-relief. Find other verified fundraisers at gofundme.com/c/act/tornado-outbreak-fundraisers.

Marshall County Fund 

The Marshall County Nonprofit Foundation has established a Venmo account to take funds at @MCNPF.

Mercy Chefs

The nonprofit that serves meals following natural disasters has set up at His House Ministries, 1250 KY-303, Mayfield, Kentucky, and will distribute food over the next few days. Donate funds at https://mercychefs.com/donation.

Relevant Church 

The church in Mayfield, Kentucky, is taking donations for a tornado relief fund at wearerelevant.churchcenter.com/giving/to/mayfield-tornado-relief.

Rise and Shine 

The mutual aid group in Bowling Green is taking donations through Venmo at @riseandshinebgky.

Salvation Army 

Visit helpsalvationarmy.org and donate to the Salvation Army Western KY Disaster Relief Fundraiser on Facebook.

United Way of Kentucky 

The agency has set up a donation site specifically for tornado victims. Visit uwky.org/tornado.

Western KY Tornado Victims

Bremen resident Courtney Cozee has established a GoFundMe at gofundme.com/f/western-ky-tornado-vitamins.

Western Kentucky Red Cross Disaster Relief Fundraiser 

Find the online fundraiser on Facebook.

Donate supplies

Green River Distillery

Owensboro residents who want to donate supplies can take them to Green River Distillery, 10 Distillery Road, beginning at 10 a.m. Monday. Most needed items include water, baby formula, diapers, sanitizing wipes, sanitizer, gloves, and trash bags.

Jefferson County Public Schools

The largest school district in the state is holding a “Stuff the Bus” event to collect donations for western Kentucky residents. Drop off donations in front of the VanHoose Education Building, 3332 Newburg Road, from 7:30 a.m. to 4:30 p.m. every day this week.

Lyon County Courthouse

People with supplies to donate in Lyon County can drop them off at the courthouse, 500 W. Dale Ave., Eddyville. Officials are requesting trash bags, coffee, disinfectant wipes, work gloves, safety glasses, and gift cards.

Marshall County Tornado Disaster Relief  

Call 270-703-2706 or 270-252-6530 to donate food, water, toiletries, cleaning supplies, and other items.

Veteran’s Club Inc.

Veteran’s Club Inc. will be collecting donations to send to Western Kentucky from noon to 7 p.m. Monday at Fern Creek Christian Church, 9419 Seatonville Road.

Suggested donations include “water, medical supplies, non-perishable food, heaters, warm clothing, large tents, and pet food.”Donations will be transported to Mayfield.

Clayton & Crume

The leather goods company, which began a decade ago in a Western Kentucky University in Bowling Green, is accepting donations via its website to support people and organizations in Bowling Green that need assistance. Any remaining donations will go to the American Red Cross.

Green River Distillery

The Green River Distillery in Owensboro is serving as a drop-off point starting at 10 a.m. Monday for locals looking for ways to help support tornado relief efforts in Western Kentucky.

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Causes

Episode 31: Raise The Barr

As we wrap up Season Two of our podcast, I can think of no greater guest than todays to conclude this inspirational season. Lori Barr is no stranger to inspirational seasons because much of her life has been based around her now-famous son’s inspirational football seasons. Lori is the proud mother of NFL Minnesota Viking’s outside linebacker, Anthony Barr. However, it is much more than his football career that makes her proud, it is Anthony’s work to serve others with their nonprofit, Raise The Barr that is truly inspiring.

Photo cred- Janae Johnson photography

Join us today for an incredible conversation with Lori Barr about her journey as a single mother to nonprofit founder. Lori shares her story of raising Anthony as a young mother and how they decided to give back to help other single moms finish their education and support their families. She is pure sunshine and inspiration, it is a conversation you don’t want to miss.

 

Here are a few highlights from our conversation:

Charity Matters: Tell us a little about what Raise The Barr does?

Lori Barr:  Raise The Barr’s mission is to increase opportunity and economic mobility for single parents, students, and their children through education. What that looks like, is providing holistic resources and support to low-income single parents, students who are in pursuit of a post-secondary degree training certification. The end goal of securing a career that offers a family-sustaining wage. We know that education is one pathway out of poverty. So that’s the road that we’ve taken because it was inspired by our own experiences.

Charity Matters: What was the moment you knew you needed to act and start Raise The BARR?

Lori Barr:  It’s kind of a combination of a whole lot of things and an intersection of all these life experiences that brought us to this point. Growing up Catholic, we were always taught very, very early on that when the basket passed that we put a little something from our own piggy bank into the collection plate. As a result, that very early experience of helping your neighbor and paying attention to the experiences of others.

Then all this stuff happens through life and I end up getting pregnant at the age of 19.  I was going into my junior year at St. Mary’s College in South Bend, Indiana. So, I kind of had to reprioritize my life and figure out how I was going to take care of myself and my small child. Those experiences kind of fueled the vision for Raise The Barr. 

In 2014, when Anthony was drafted in the top 10 of the NFL Draft, we held a youth football camp.  It was free and for the local community to get to meet Anthony.  He was kind of a local star and he wanted to bring all these people together. It was an amazing day, we had over 300 Kids, 150 volunteers, and all of these people coming together. After that experience, he and I sat down and said, “Wouldn’t it be cool if we could harness this energy, and this enthusiasm, with your platform to really do something big and have a big impact on families like ours?” That’s where Raise the Barr was born.

It really started from our own stories and experiences. What we originally thought was let’s just start a scholarship fund for single moms like me, who are trying to do something to support their family but they may need a little support. We thought that support looked like a scholarship. Although that is still part of our overall programming, that isn’t even the tip of the iceberg of what single parents need in order to persist through post-secondary, it’s just one part of it.

Charity Matters: What are your biggest challenges?

Lori Barr: Right, it is hard work. I think that recognizing what your limitations are, is humbling.  It puts you in a place to realize that we need to kind of stay in our lane. For us, it was recognizing that one of our biggest challenges was diverse revenue sources.  Our biggest funder could not be Anthony.  We needed to be sustainable and we really had to dig to create diverse revenue streams.

Our second biggest challenge would be brand awareness. It really is about folks learning about you and coming up with a plan of how you’re going to market your product. In order for people to get engaged, you have to start with building a relationship and building trust. That’s brand awareness, trusting who we are. When you see our logo, when you hear tackling poverty, we want you to think about Raise the Barr.

Charity Matters: What fuels you to keep doing this work?

Lori Barr: The families we serve, the relationships that we’ve built, and the belief in our mission. Also,  knowing that this works and that we are having an impact.  Seeing the results of our early work, that’s what keeps us going. That’s what when I’m lying awake at night thinking, oh my God, I need to do blah, blah, blah, and I remember why we’re here. It is one step at a time. And, you know, we’re doing good work and we keep that in mind every step of the way.

Charity Matters: Tell us what success you have had and what your impact has been? 

Lori Barr: 99% of our scholars have earned a degree or graduated.  When we talk about increasing economic mobility, the annual income on average of an applicant, when they come into the Raise The Barr family is about $15,000 annually. Upon leaving and securing a career, the average income is $64,000 a year. So there’s a huge increase, and they can now support themselves and their family moving towards true prosperity.

For us, it’s totally about the stories and where they are now.  A real quick story of Tanya. She is a Native American single mom who grew up in poverty. Father in prison,  a mother struggling to make ends meat and college was not in her plan.  She became a mom at a young age. And, like me, she decided she better get into school and figure something out. She went through community college and ended up transferring to a university. Today, she is now being invited by the American Indian Science and Engineers Council to speak and present at their conference. She is a chemist and will graduate this December. Her son is a fourth-grader, he’s achieving above grade level, three grades above with reading and math. Those are our success stories. That’s the impact that we’re having.

There are so many more stories like Tanya that we have and that we really celebrate because these are lives that are changed. That we can be a little part of that change, and create hope and opportunity to me, that’s a huge success.

Charity Matters: If you could dream any dream for your organization, what would that be?

Lori Barr:  I think mine would be so similar to so many other small nonprofits out there. The dream is that we have all the resources that we need to do the work that we do. Our dream would look like us being able to really provide the resources needed to single parents, students everywhere, so they could succeed.  That might look like something practical, like an endowed scholarship, that also might look like having strong partnerships with post-secondary partners.  There are little things like that, which I think would help us continue this work, and really have an impact and really start to crack generational poverty.

Charity Matters: What life lessons have you learned from this experience?

Lori Barr:  I’m a teacher at heart, that’s what I was trained to do, and I went on to pursue a master’s degree in counseling and psychology.  So, I would say that I think I’m a pretty good listener. This has taught me to listen more, and talk less. And it’s taught me to really be more thoughtful about how I approach my own life. I think about the experiences of others. Somebody else’s experience is just as valuable, if not more than our own, and so listening, thinking, and letting that help our decision-making. 

As a sports mom,  I always use a sports analogy but really learned to focus on how to build a championship team.  Bringing the right people on board,  all with different skill sets. As a single parent, so often I carry the burden completely on my own, and decision-making all by myself.  It was not really, within my experience for 29 years to say, I need to bring others into this to really help us have a great impact. And that’s changed for me.

I’m just happy for folks to inquire and to share what we’re doing.  A big part of increasing our impact is raising that awareness and really building that championship team.

CHARITY MATTERS.

 

New episodes are released every Wednesday!  If you enjoyed today’s episode, please connect with us:
YOUR REFERRAL IS THE GREATEST COMPLIMENT,  IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.

Copyright © 2021 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

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Holidays and Holiday Giving

A Season of Giving

 

“Remember that the happiest people are not those getting more, but those giving more.”

―H. Jackson Brown Jr.

Yesterday was Giving Tuesday which means officially that the season of giving is upon us, a time of year when we feel kindred spirits towards our fellow man.  City streets are decorated and the clanging of the Salvation Army bell fills us with joy as we drop a few dollars in the shiny red bucket. For about forty days a year, we are called upon to be charitable. Why is giving only expected just once a year? More than that, how can we incorporate a little holiday season throughout our entire year?

Why We Give

We give gifts to those we love throughout the holidays for a number of reasons. First, we want to show those that we love by giving them something that will make them happy. Another reason we give gifts is to acknowledge our appreciation to someone such as a business associate,  a neighbor, the dry cleaner, or anyone who makes your life better. When we give these gifts it is typically the gift giver that receives the most joy in the giving. Charity is no different. It is the giver of a gift that feels the resounding joy and goodwill from making another’s life better.

Where to begin?

For many of us, we want to help but often don’t know where to begin. While dropping a few dollars in a red bucket at the holidays is nice it is not a long-term solution to incorporating charity into your life. Like any lifestyle change, it takes a few things to begin. First and foremost, is your goal or intention. What do you hope to accomplish? Do you want to find a like-minded group of people to volunteer with? Perhaps something has happened recently in your life and you would like to find a way to help an organization that helped someone you care about.  Maybe you have been the recipient of someone’s kindness and would like to pay it forward. Or perhaps you are trying to be an example for your children. Think about what you would like to accomplish. There is no wrong answer.

The next step is to identify a cause or nonprofit organization. With 1.5 million charitable organizations in the United States alone, it can be overwhelming. First, find the area of interest, is it education, health, military? Fortunately, there is an abundance of online resources.  For volunteering, there are great sites like VolunteerMatch.org or CatchAFire.org that match you with nonprofits based on your interest and location. PointsofLight.org offers a variety of online or virtual volunteering opportunities.

Make giving part of daily life

For people looking to incorporate giving more into a habit, there is a host of apps for your phone. The app Daffy helps you make giving a habit by setting up daily, weekly, or monthly giving goals and delivers the funds to your cause of choice. Other options are incorporating apps like Roundup App that round up your change and donate it to your favorite cause on purchases you make throughout the year. There is even an app that helps you shop finding sustainable products and brands called the Good Human App.

Here are a few tips to remember as we approach the season of giving:

  1. Set a goal or intention for what you want to achieve. Volunteering, giving back, raising philanthropic children
  2. Find an area of interest. Think about what is important to you? Health, education, military?
  3. Do your homework. Utilize online resources and apps to find ways to incorporate giving into your daily life.
  4.   Make giving habitual by being consistent. Whether it’s a holiday tradition, something you do at birthdays, or every day, be consistent. Establish giving as a tradition and habit. The more you participate the easier and more fun it becomes.
  5.  Emphasize the joy and the experience of giving rather than money. Philanthropy is about being a part of something bigger than yourself. Make it a joyful experience and something that makes you feel great.

This holiday season; enjoy the process of giving in whatever ways you decide to participate. Ultimately, we get so much more when we give. With a few simple changes, you can experience the season of giving all year long.

CHARITY MATTERS.

 

 

YOUR REFERRAL IS THE GREATEST COMPLIMENT,  IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.

Copyright © 2021 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

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Education

The Power of Storytelling

Some of my earliest memories were the stories my parents told me. My father is Irish and loves to tell a good story. While my mother loved to tell stories of our family’s history and read to us as children. I could never get enough. It wasn’t until years later when I realized that my gift of gab actually was also a gift for storytelling. For the past decade, I have been telling stories to you each week about remarkable humans here at Charity Matters.

So when Professor Biel reached out to me from USC Marshall School and asked me if I would talk to her class about storytelling and nonprofits, I was really excited. I love going back to my alma mater and more than that I love telling stories. Today, rather than a podcast I thought I would share a little about what I shared with the class this past week.

There’s an old American Indian Proverb that says, “Those who tell the stories rule the world”.

I’m excited to talk about the power of storytelling and how we use stories to learn, to connect, and to build relationships and ultimately businesses/nonprofits specifically. If you think about it, one of the first things we learn as children is stories. Our parents read us stories and we watched Disney stories in movies. Stories are part of who we are and where we came from. There is a story in all of us.

The best stories are true, they have a beginning, a middle usually with a conflict, and an ending we hope with a happy resolution.  

So rather than introduce myself properly, I’d like to tell you a story….my story. the one that changed my life from having a  career in the software business to becoming a nonprofit founder, a storyteller, and a person on a mission to make the world better one story at a time.

Spiritual Care Guild

We tell stories get volunteers, communicate our vision, connect a community, to raise money…because in the nonprofit world the product that we sell is humanity….and we don’t sell, we tell…stories.  Stories of those we serve. The stories are the connective tissue for our organization. They are the threads that connect our quilt and in this case, the quilt is a nonprofit. To sell your vision you have to tell the story.

 Neurologists have studied storytelling and there are three main things that happen to our brains when we hear stories like the one I just told you

  1. We remember, our neural activity increases fivefold
  2. Stories generate empathy, like the empathy we just had for the girl with her pink blanket because our brains generate more oxytocin, (OXY-TOE-SIN) which predicts how much empathy we have.
  3. Stories bring us together- we all collectively felt that compassion for that family, the empathy, which is why we watch movies on dates. We just all shared an experience and felt like we were in that room with the little girl.

After a few years of working with an incredible group of volunteers to launch the Spiritual Care Guild, I began to wonder who were these other people who started nonprofits and why? What was their story? At the time there wasn’t People Magazine Heroes Among Us or CNN Heroes or Upworthy…I realized there were 1.5 million nonprofits in the US and I wanted to know who started them and why? So I decided to find these nonprofit founders and tell their stories. 

Charity Matters

I realized that if I can help the helpers I could help the most people. My impact and my skills as a storyteller would do the most good. I also quickly realized that all of these nonprofit founders had the makings for a great story. They had a conflict; a struggle, an obstacle, and that they had overcome their adversity and used it to help others, the happy ending….which was the perfect recipe for great stories. Nonprofit founders wanted to tell the stories of their work and not necessarily their own which was often the most powerful story of all. I am still telling these stories and fascinated by them each week. These are my people, people who have given their lives to serve. They are true leaders.

This leads me to a key component of any business/nonprofit and that is leadership. 

TACSC

 In 2013, I took over a 32-year-old nonprofit in need of some updating. Their messaging and stories didn’t exist but what they did (and did well)  teaching leadership did exist.  So we started by defining the work TACSC does and sharing that message…in order to lead you to need to:

  1. Have a vision, a plan
  2. Be able to communicate that plan
  3. Be a lifelong mentor
  4. You can not lead unless you serve

We began with that message and went in search of stories from our alumni and then found stories from those students we were serving,  what was their story? Those stories took TACSC from serving 300 children a year to 3,000 with only 2.5 employees. That is the power of a story and a message. Each of these stories built and rebuilt three brands. Two of which are nonprofits, Spiritual Care, Charity Matters, and TACSC. They all started with a vision, then a story to communicate that vision, each organization brings along mentors and all three based on serving others. Leadership and nonprofits follow the same path.

Remember the power that stories have to connect us, build relationships, and command the most influence in your community, nonprofit, or business. So if you do one thing with all of this …..think of what your story will be? How will you use your gifts to serve others? 

Make your life a story worth telling!

 

CHARITY MATTERS.

 

YOUR REFERRAL IS THE GREATEST COMPLIMENT,  IF YOU ARE SO MOVED OR INSPIRED, WE WOULD LOVE YOU TO SHARE AND INSPIRE ANOTHER.

Copyright © 2021 Charity Matters. This article may not be reproduced without explicit written permission; if you are not reading this in your newsreader, the site you are viewing is illegally infringing our copyright. We would be grateful if you contact us.

 

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Cancer

Episode 28: Pancreatic Cancer Action Network (PanCAN)

We all know that October is Breast Cancer Awareness month but did you know November begins Pancreatic Awareness month? Believe it or not, November is just days away. A few weeks ago I was having lunch with a new board member of the nonprofit I work for. We were having a fantastic conversation about the nonprofit she works for called Pancreatic Cancer Action Network or PanCAN. She asked me, “Why haven’t you interviewed PanCAN for Charity Matters?” My reply was, “I would love to!” Like that she had me introduced to PanCAN’s first employee, President, and CEO, Julie Fleshman.

I have to admit I was a little intimidated because under Julie’s leadership PanCAN grew from one employee to 150. PanCAN has funded over $149 million dollars in research for Pancreatic Cancer and created a platform that has fueled incredible change for the Pancreatic Cancer community. Despite my fears, Julie was beyond amazing, passionate and so much fun to talk to. Join me today to meet this inspirational leader and learn about her incredible journey in changing lives.

Here are a few highlights from our conversation:

 

Charity Matters: Tell us a little about what The Pancreatic Cancer Action Network does?

Julie Fleshman: PanCAN is a national patient advocacy organization focused on pancreatic cancer. Our vision is to create a world in which all pancreatic cancer patients will thrive. So every day, that is what we are focus on. We fund research and clinical initiatives, we provide patient services and we do government advocacy work in Washington, DC to increase the federal resources. And we have an amazing network of volunteers all across the country that are helping us to raise awareness, visibility, and funds for the disease.

Charity Matters: Tell us how you got involved and went from employee number one to CEO?

Julie Fleshman:  I got involved 22 years ago now, it is hard to believe. In 1999, my dad was diagnosed with pancreatic cancer when he was only 52 years old. He hadn’t been feeling well, but they couldn’t really figure out what was wrong with him. At one point, he was told to go home and take some time because they thought he was just having indigestion. Unfortunately, it ended up being a diagnosis of pancreatic cancer. He only lived for four months after his diagnosis and we were devastated.

I had never heard of pancreatic cancer, we really didn’t have cancer in our family. And I could not believe that there was absolutely nothing that could be done that there were no treatments. We were basically told, go home and get your affairs in order. So after he died, I was mad, and I started to do some research back in those early days of the Internet.  PanCAN had just been founded in 1999 by three people who had also all lost their parents the disease. One thing led to another, sort of serendipity,  I ended up being hired as the very first employee in 2000.

Charity Matters: What Have been your biggest challenges?

Julie Fleshman:  I think there are two sets of challenges. One is the challenge of this disease. It is a challenging disease scientifically. Certainly when PanCAN was founded, literally, there was very little known about even why it was challenging. So the baseline was really nothing. There was so little research happening anywhere in the country focusing on pancreatic cancer. So there was that challenge of how do we even attack this? What is the strategy? And what do we do?

Then there’s the challenge of the organization and the operations and raising money and what our programs going to be. And hiring staff and all of those things.  I think we did a really good job in the early days of creating excellent programs, that we’re serving the pancreatic cancer community.  Our patient’s services were literally providing services to patients and families.  Also on the research side, really looking at the big picture and saying, “Okay, at this time, we’re small but where can we have the greatest impact with the least amount of dollars?”  I think we did a good job being smart in those early days about what those things were. You know, we just feel very lucky that it is an amazing community, from the research community to the constituents, volunteers, and donors, who have helped us to continue to grow year over year.

Julie with Patrick Swayze’s widow, Lisa Swayze

Charity Matters: What fuels you to keep doing this work?

Julie Fleshman: I think although, the progress is never as fast as we want it to be. But you know, you meet people and you share their stories and you talk to a patient and maybe that they’re not going to beat it, but they want to be a part of helping to make sure that it’s better for future people. That just gives you that inspiration to say, we got to keep doing this for them. If they’re not here to get to be that voice, we have to be that that voice for them. And there are successes, right? It’s not maybe the big win that we all want that there’s a cure, but there are steps every day towards that. So you really have to celebrate sort of those small wins.

Charity Matters: Tell us what success you have had and your impact? 

Julie Fleshman:  Ultimately, we’re trying to change patient outcomes. So for cancer and looking at pancreatic cancer, we sort of use the five-year survival rate.  That’s the kind of Capstone it doesn’t move very quickly, but it has moved from 3% when I started doing this, to 10% today. That is still unacceptable but is absolutely moving in the right direction.

Then you have to look at sort of all the things day to day. Like the research grants that we’re funding and when and those researchers go on to publish that work and that publish work changes practice. Then the next researcher who’s now going to take those that outcome and they’re going to add to it to get to the next step.

 Just last year alone, we had 45,000 interactions with patients and families through email and phone calls and people attending our webinars using all of our different patient services. I know from the feedback that we get, how meaningful that is to people. Especially those families that connect with one of our case managers and utilize them throughout their journey that when that family member dies, usually our case managers get the most beautiful email or card from the family saying, thank you for being there with us through this whole journey and so even though the outcome isn’t what we want it to be yet they add to the making it a more positive experience.

 I can see there is a pancreatic cancer research community today that didn’t exist. There was not a research community focused on pancreatic cancer 20 years ago. There are more resources being put towards the disease across the board and all of that is helping to drive and accelerate progress. I feel like every year now there’s sort of this major scientific breakthrough. That before it felt like it was a really long time between when it felt like we were making progress.  You can definitely see the momentum is picking up and, and the rate of progress is much faster.

Charity Matters: How has this journey changed you?

Julie Fleshman:  It is hard for me sometimes to believe it was 22 years ago that my dad died. I mean, really, it feels like a lifetime ago in some ways. And in other ways, I can still remember sitting on the couch next to them and having a heart-to-heart. Those are things when you lose a parent, or someone close to you, that are life-changing, and really do change the way you view the world.

I always think God, I’d love, of course, my dad to be back. But I also cannot imagine my life without PanCAN. This has become such an important part of who I am and what I do, and just everything, it’s so important to me. So I feel like, in this strange way, he gave me this amazing gift. Right? And it’s not just doing the work, but I  feel passionate and committed to being a part of changing outcomes.

CHARITY MATTERS.

 

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