Social Impact Heroes: How Emily Rogath Steckler is raising awareness and funds to treat and cure Infantile Neuroaxonal Dystrophy (INAD)
Together with the INAD Cure Foundation, we are working to eradicate INAD. Yes, we are working to cure a rare disease, but the potential impact extends well beyond INAD’s reach. Further understanding of INAD could help develop new treatments and ultimately a cure for some forms of Parkinson’s disease, Alzheimer’s, and Lewy Body Dementia. There have been numerous studies that address the link between INAD (PLA2G6 mutation) and these other neurodegenerative diseases, which impact an astonishing 50 million people worldwide! The children affected by INAD experience the same physical and mental regression as adults affected by these diseases, but since they’re diagnosed as such a young age, they do not have the same environmental factors at play. I like to think of it as the purest form of the disease. Medically, we can learn a lot from INAD.
As part of my series about “companies and organizations making an important social impact,” I had the pleasure of interviewing Emily Rogath Steckler. Emily has extensive experience in Public Relations and Marketing and has applied that knowledge to Bisous For Léo. With a Master of Arts from New York University in Visual Arts Administration, she worked in PR for such companies as I|D Public Relations and Warner Brothers Pictures Group. She also worked in Marketing for Terry Hines & Associates and Creative Riff. Bisous For Léo is Emily’s first foray into the nonprofit world.
Thank you so much for doing this with us Emily! Can you tell us a story about what brought you to this specific career path?
Thank you so much for having me! I shifted from for-profit work to non-profit work when I learned that my best friend Deborah Vauclare’s son Léo was diagnosed with Infantile Neuroaxonal Dystrophy (INAD) in June 2018. The shift happened organically. I admittedly never heard about INAD prior to his diagnosis and as soon as I was able to digest its implications, my wheels started spinning. It became obvious to me that a campaign was needed that could spread awareness for the disease and raise funds to progress the medical research needed to treat and hopefully cure INAD.
Can you share the most interesting story that happened to you since you began leading your company?
I carry Bisous (Kisses) For Léo pins with me whenever I leave the house. They are di-cut to look exactly like the campaign’s logo. I hand them out to people with large social media followings when our paths cross. Everyone presented with one has been gracious enough to take it; some even offer to post their Bisous For Léo kisses on the spot. I’ve only had one person refuse to take it and then berate me on the spot. He’s publicly known so I’ll be kind enough not to mention his name, but the response was so dramatic that others around me rallied in my defense, without even knowing the crux of the campaign. So, despite the outburst, my faith in humanity remains intact thanks to the kindness of strangers.
Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson you learned from that?
It’s not so much a mistake as a shortcoming. I was never on Facebook prior to launching Bisous For Léo. I have a pretty solid hold on Instagram, but Facebook, not so much. The takeaway is to recognize your strengths and weaknesses and focus on what you can do. Ask for help in anything else or prepare to be very frustrated.
Can you describe how you or your organization is making a significant social impact?
Together with the INAD Cure Foundation, we are working to eradicate INAD. Yes, we are working to cure a rare disease, but the potential impact extends well beyond INAD’s reach. Further understanding of INAD could help develop new treatments and ultimately a cure for some forms of Parkinson’s disease, Alzheimer’s, and Lewy Body Dementia. There have been numerous studies that address the link between INAD (PLA2G6 mutation) and these other neurodegenerative diseases, which impact an astonishing 50 million people worldwide! The children affected by INAD experience the same physical and mental regression as adults affected by these diseases, but since they’re diagnosed as such a young age, they do not have the same environmental factors at play. I like to think of it as the purest form of the disease. Medically, we can learn a lot from INAD.
Wow! Can you tell me a story about a particular individual who was impacted this cause?
There would be no Bisous For Léo without Léo Vauclare. While Bisous For Léo benefits all children affected with INAD, Léo is the driving force behind the campaign. I was in Paris the day he was born and saw him develop while hitting his developmental milestones, until he began to rapidly regress around 18 months, leading to his INAD diagnosis. Despite the challenges that have crossed his path, he remains the sweetest. He’s a shining light in the face of adversity.
Are there three things the community/society/politicians can do help you address the root of the problem you are trying to solve?
There absolutely are. When I found out I was pregnant with my son Dylan, I went to my gynecologist for genetic testing. My husband and I are both Jewish, so I asked for extensive testing to ensure my chances of having a healthy child. As previously mentioned, I had never heard of INAD prior to Léo’s diagnosis so didn’t know enough to ask to be tested, and it wasn’t included in any of the tests that were conducted on me. My takeaway is that my child could have had INAD if my husband and I were carriers and didn’t know enough to ask to be tested for it — just like what happened to Léo’s parents. The disease is autosomal recessive, meaning both parents need to be carriers in order for their child to have a chance at developing the disease. So, regarding politicians, I would encourage them to make extensive genetic testing standard and more readily available. Insurance should too. Insurance companies would spend less money covering genetic testing than they would covering a child who develops INAD. It’s important to know not only what’s included in the tests, but also what’s not included in the tests so that you can advocate for yourself.
And society at large? Donating at BisousForLeo.org and posting kisses on social media tagging @BisousForLeo are ways everyone can help. If you don’t have enough money to give financially, your gift of awareness also helps further the cause.
How do you define “Leadership”? Can you explain what you mean or give an example?
Leadership to me is doing the right thing. I lead by example with my children and my heart is full when I see others doing the same. Zoe Saldana’s reaction to Bisous For Léo was the purest form of leadership. I ran into her at an event and briefed her on the campaign. Her reaction? She stopped everything she was doing to post her kisses. If we don’t educate others and lead by example, then the path that needs to be paved won’t exist.
What are your “5 things I wish someone told me when I first started” and why. Please share a story or example for each.
- You will get more NOs than YESes. For every post on social media, I get numerous NOs or non-responses. I am constantly reminded to keep spreading a wide net. Anyone can post their Bisous For Léo to make a positive impact.
- Don’t give up. There are days when I want to scream because people aren’t doing what I want or would expect them to do. Despite the setback, I need to keep my emotions in check and keep moving forward.
- Stay in your lane. As my Soul Cycle instructor Angela Manuel-Davis reminds me, it’s important to stay in my own lane. Look at the direction you want to go and keep that as your focus. Do not be bothered by others in their own lanes.
4 and 5 are variations of the above. Above all else, never give up or lose focus.
You are a person of enormous influence. If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. 🙂
You’re looking at it! Bisous For Léo all the way…to potentially help 50 million people. I don’t think there’s a way for me to feel more fulfilled.
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
It would have to be Gandhi — “You must be the change you wish to see in the world.” I try to evoke those words every day in all aspects of my life.
Is there a person in the world, or in the US whom you would love to have a private breakfast or lunch with, and why? He or she might just see this, especially if we tag them. 🙂
Michael J. Fox. INAD and Parkinson’s are so closely linked; if we worked together I think we could move mountains. We have a shared doctor in Dr. Paul T. Kotzbauer, MD, PhD, and professor in the Department of Neurology at Washington University School of Medicine. His current research is focused on understanding disease mechanisms and developing improved diagnostic and therapeutic approaches in Parkinson’s disease and in the hereditary neurological disorder NBIA — Neurodegeneration with Brain Iron Accumulation, under which INAD falls. As explained by Dr. Kotzbauer, “I have been able to identify a definitive link between Parkinson’s disease and INAD. Accumulation of the alpha-synuclein protein, a defining feature of Parkinson’s disease, also occurs in INAD, affecting the same regions of the central nervous system. Thus, further understanding of these two neurodegenerative disorders will help to develop new treatments and ultimately a cure.”
How can our readers follow you on social media?
Instagram: @BisousForLeo
Facebook: https://www.facebook.com/bisousforleo/
This was very meaningful, thank you so much!
Thank you again for having me!