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Bisous for Léo

The world is a small and amazing place. More than that, the world is full of good people. One degree of seperation connected me to one of those exceptionally good people, Emily Rogath Steckler. Emily had a career in public relations when her best friend’s son, Leo, was diagnosed with a rare disease changing the course of so many lives.

Join us for a beautiful conversation about love, friendship, hope, and the incredible journey to find a cure to INAD for five-year-old Léo. Learn about the work that Emily and her best friend Deborah are doing to help millions with their amazing organization Bisous for Léo.

Here are a few highlights from our conversation:

 

Charity Matters: Tell us a little about what Bisous for Léo does?

Emily Rogath Steckler:  Bisous for Léo is an ancillary arm of the Inad Cure Foundation. This is the only United States-based foundation set up to try to treat and cure a rare disease called infantile neuroaxonal dystrophy or INAD. In layman’s terms, it’s a cross between Parkinson’s, Alzheimer’s, and Lewy body dementia. The children who have Inad share a gene mutation with some forms of Parkinson’s and have the same parthenogenesis as those adults who have Alzheimer’s. It’s an ultra-rare disease where there are probably between 150 to 200 children worldwide who are currently affected. But because of the genetic links, the hope is that by treating the children who were affected, we could in turn help treatment and cure options for those who have Alzheimer’s, Parkinson’s, and Lewy body dementia.

Charity Matters: What was the moment you knew you needed to act and start Bisous for Leo?

Emily Rogath Steckler:  Leo is the son of my best friend Deborah.  Deborah and I went to high school and college together.  We’ve just gone through life together.  Deborah ended up winning this unbelievable internship for an interior designer in Paris. That led to her finding love at this firm and marrying this unbelievable French man named Anton. And together they had Leo.

 Leo developed normally for about two years. After that, he started showing extreme signs of regression. All the skills he had learned from walking to talking, to feeding himself, and cruising, literally, everything began to deteriorate. So eventually, they turned to a geneticist, who was able to diagnose him with this ultra-rare disease called Inad. When he was diagnosed, we started doing the research to figure out what it actually meant, because admittedly no one had ever heard of this disease.

There are 50 million adults worldwide who are affected by Parkinson’s and Alzheimer’s, Lewy body dementia, and neurodegenerative diseases.  As soon as that genetic link was made, we realized we had to take action. Actually, in 2007, my grandmother had passed away of Lewy Body dementia. It was horrible watching her deteriorate.  To think that children would suffer the way that I saw her suffering,  it’s inconceivable. As soon as you understand that these children are genetically linked to 50 million adults who are actively suffering currently from these neurodegenerative diseases. Why isn’t everyone not rallying around the children? So we founded Bisous for Leo three years ago.

Charity Matters: how Did you get The Name for your organization?

Emily Rogath Steckler: We had a trip scheduled to visit Deborah the day after Leo was diagnosed. We went to their apartment and almost instinctively,  I think my daughter Chloe picked up that something was off.  So we walked into the apartment and she went right over and gave Leo a kiss. I snapped a picture.  I just sat there looking at them thinking, if only we could kiss this thing and make it better. At the moment that the photo was taken, I didn’t even know what the thing was, but I knew somehow kisses would need to be involved in helping the cause. Bisous is the French word for kisses.

Charity Matters: What are your biggest challenges?

Emily Rogath Steckler: Getting people to listen long enough to understand that by treating the rare disease, we can potentially help so many millions of people worldwide. I think people’s attention spans are pretty short these days. When you think back to when aids came onto the scene, there was an education factor. You never really think of a pro when talking about a deadly disease. But the pro in that instance is that so many people were affected by AIDS, that they had to pay attention. 

In this instance, there are only a couple hundred children who are affected. Once you are able to understand that the children are the purest form of this mutation. The adults who have early-onset have experienced more life, they have more environmental factors, they have sun exposure, they’ve consumed alcohol, they have caffeine, and you know, these children are pure. So getting people to understand that and me relaying it in as few words as possible, is really a clutch thing.

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

Emily Rogath Steckler: We haven’t achieved our goals yet. So until there is a treatment or cure, I have no intention of stopping. These children are the missing puzzle piece of this larger neurodegenerative equation, and it is scientifically proven.

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

Emily Rogath Steckler: There’s so many, and I consider every victory, big or small to be a victory. I mean, this podcast is an example, you’re using your platform to help me get the word out, which is really half of the challenge. It’s education, and it’s funding.

Charity Matters: Tell us about your success and your impact? 

Emily Rogath Steckler:  I’d say the biggest impact has been the awareness raised and generated through our Kisses for Leo campaign  Prior to the launch of it, there were very limited resources. We’ve had so many wonderful celebrities who have lent their voice and their kisses to the cause. Everyone from  Lady Gaga to Eva Longoria and Laura Dern. They’ve all taken a minute to post their kisses on social media, send their kisses in, and it every kiss posted furthers this awareness factor. They obviously have much larger platforms than we do. The fact that there is such grace that they would take a minute to lend their voice and say this cause is valid. And with this kiss, I support this work and educate you. I mean, that’s a huge impact.

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

Emily Rogath Steckler: Obviously to eradicate the disease entirely.  I would love for a larger organization to want to work with us to help further the science.  Again, there is such a proven link between Parkinson’s and Alzheimer’s and Lewy body dementia. If any of the larger foundations that are working on those causes said,”Yes, we agree that these children are important to the work that we are currently doing.”  It would be such an immense help because as you said, the funding is a huge issue.  Every dollar raised we put back towards medical advancements. If a larger organization or foundation said we understand why these children are so vital and we would love for them to be a part of our work. I mean, my heart would just explode. It would be so good.

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

Emily Rogath Steckler: .  I’ve learned so much but really not to take health for granted. I’d say that’s the biggest thing, I am guilty of probably having taken it for granted in the past. Now every day that I wake up and I’m healthy and my family is healthy and my children are healthy. It’s no longer just a small thing that I take in stride. I’m very grateful for that.

Charity Matters: How has this journey changed you?

Emily Rogath Steckler:  I have more perspective. I feel how short and tragic and beautiful life can be. This is obviously a horrific thing for any family to face but I have found such beauty in humanity. I’ve been so comforted that I have received calls from friends from high school who I haven’t spoken to in 20 years.  So I have had my faith in humanity restored.

CHARITY MATTERS.

 

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Causes

Opening Minds Through Art (OMA)

“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.

Opening Minds through Art (OMA) from NoahApplebaum.com on Vimeo.

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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Copyright © 2019 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

Alzheimers

There is nothing I enjoy more than connecting friends and colleagues, especially when there is a good cause involved. So a few weeks ago when I connected two remarkable women, one a fundraiser for USC and the other a well known wealth strategist for Northern Trust, I was thrilled when I received the invitation for an event on Alzheimers the two partnered to put together.

It was a fantastic morning conversation with  Dr. Helena Chang-Chui, a world renown researcher and a top Alzheimer specialist. She is the chair of the Keck School of Medicine of USC’s Department of Neurology and has authored over 182 publications on the topic and was fascinating to learn from, which is why I wanted to share.

Every 66 seconds, someone in the United States is diagnosed with Alzheimers and chances are each of us knows someone who has been affected by this devastating disease. We learned that Alzheimers disease is the 6th leading cause of death in the United States and according to the Alzheimer’s Association there are currently about 5.5 million people currently living with the disease. Without successful treatments that number is projected to rise to about 13.5 million by 2050! The longer people live, the more Alzheimer’s disease there will be.

So that’s the bad news. Here is the good news:

The National Institute of Health recently allocated $1.3 billion to Alzheimer’s disease research which was $884 million more than ever before! Now the top researchers in the country Harvard, the Mayo Clinic and USC Alzheimer’s Therapeutic Research Institute will be working together with some of this funding to find a cure. In the meantime, Dr. Chui shared with us a few things we can all do to protect our mental health.

  1. Diet– A Mediterranean diet based on nuts, fruits, vegetables, whole grains, fish, olive oil, coffee and coconut oil has all proven to activate the brain’s metabolic function and may prevent or slow the onset of Alzheimers disease.
  2. Exercise– The brain’s processing speed can begin to slow down as early as 25 but exercise bulks up existing neurons and improves communication between brain cells. The Doctor said it is like a bank account where what you do now strengthens cognitive resilience later.
  3. Quality Sleep- Six to eight hours of sleep for adults is critical so that toxic proteins that are implicated in Alzheimers disease are flushed out during sleep. It is the bodies time of rebooting and sleep gives the body time to restore.
  4. Connect with Others-Relationships are good for the brain and the heart and current research suggest that there is a connection between social interaction and brain health. Being social connects neurons and activities with friends can give the brain added benefits.
  5. Managing Stress-High stress encourages behaviors such as poor eating habits, isolation, or decreased exercise all which increase the risk of dementia which could lead to changes in the brain.

The take away from this fantastic conversation with Dr. Chang-Chui was that we all need to proactive with our health and that includes our mental health as well. We can all take steps today to make tomorrow better for ourselves and our loved ones.

charity matters.

 

 

Sharing is caring, if you are so moved or inspired, we would love you to share this to inspire another.

Copyright © 2018 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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Charity Matters Inspiration

Friends with Causes

alzheimers-fwc

Last week I was invited to my friend, Alexandra Dwek’s home for another amazing and inspirational evening in support of Friends with Causes. Not book club or bunko but girl’s night with a wonderful speaker, cause and philanthropic goal. We are always surprised by the non-profit, the speaker and are completely engaged and last week’s dinner was no exception.

The first speaker was Kate Edelman Johnson, who shared the journey of her loving husband’s slow deterioration with Alzheimer’s. Kate reached out to her friend’s daughter for guidance, Patti Davis, who been through the journey with her father, Ronald Reagan. Kate spoke about what caregivers and loved ones of Alzheimer’s patients endure with this disease.

Kate began attending Patti’s Beyond Alzheimer’s support group and soon realized that she was in the position to not only support Patti’s amazing work but also the bigger problem of funding Alzheimer’s research. So Kate founded the Deane F. Johnson Alzheimer’s Research Foundation. She told us that without the discovery of new treatments, the number of Alzheimer’s victims will grow from 35.6 million to 65.7 million in 2030.

As we listened to Kate share her journey and then Patti Davis sharing hers, both as a daughter and as someone who has spent the last six years with these families in her work. Patti told us, “You need to be with other people who know what you’re going through, who won’t judge you or dismiss you. Several group members have told me that, before coming to this support group, no one had ever asked them how they were doing.”

These family members become patients too with this disease and it is people like Kate and Patti who take their suffering and turn into hope for others, that continue to inspire.

 

Charity Matters.

 

Copyright © 2016 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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