We had the good fortune of connecting with Emily Rogath Steckler and we’ve shared our conversation below.
Hi Emily, can you talk to us a bit about the social impact of your business?
Bisous For Léo was founded in 2018 to help raise awareness and funds for children with a rare inherited neurological disorder called Infantile Neuroaxonal Dystrophy (INAD). The children with INAD share the exact same gene mutation found in some forms of Parkinson’s and share a pathogenesis with Alzheimer’s and Lewy Body Dementia. These kids experience the same physical and mental regression as the adults affected by these diseases, but since they’re diagnosed at such a young age, they do not have the same environmental factors at play. They’re as pure as they medically can be, which is why the children are so important in the larger neurodegenerative puzzle. Just pause and think about it – infants with a mix of Parkinson’s and Alzheimer’s. There are 50 million people worldwide who are genetically linked to these children. It behooves everyone trying to eradicate the larger neurodegenerative diseases to put greater focus on them; they are the missing puzzle piece.
Let’s talk shop? Tell us more about your career, what can you share with our community?
Bisous For Léo is an ancillary arm of the INADcure Foundation, the only US-based non-profit striving to raise funds to advance medical research and treatments for INAD. Leena, the founder of INADcure has a daughter with INAD, so she understands firsthand how challenging it is to have a child with an ultra rare disease. There are no known treatments or cures and we’re collectively working to change that. Léo and Ariya, Leena’s daughter, are enrolled in the first ever clinical trial; which in and of itself is a gigantic feat. The hope is to not only save the children with INAD, but also apply the findings to the adults with Alzheimer’s, Parkinson’s and Lewy Body Dementia. Expediting everything we do is of utmost importance since the projected lifespan of the children ranges between five and ten years of age. If we don’t act now then the findings will exceed their lifetimes.
I’m proud of how much has been accomplished since the inception of Bisous For Léo. We are currently trying to identify a biotech that will expedite the research that we and INADcure are funding. Institutional funding will be key to our success. That or governmental support for a neurodegenerative “Operation Warp Speed.” I’m excited because it feels like we’re on the cusp of “something.” I’m not able to pinpoint it just yet, but it’s that anticipatory energy that’s currently palpable.
In terms of my own professional journey, I have worked in both publicity and marketing. Bisous For Léo is my first foray into the non-profit world, but the skills I learned prior are easily applied. One of the goals is to raise awareness; the other is to raise funds. There’s a solid amount of PR that’s needed to accomplish both. I am grateful to my mentors who have shaped my work ethic. Without such, my abilities to launch Bisous For Léo alongside Deborah, Léo’s mother, would not have been applicable.
If you had a friend visiting you, what are some of the local spots you’d want to take them around to?
My favorite one-two punch is a lunch at Croft Alley followed by an iced matcha latte with boba at Alfred Tea Room on Melrose Place. I also love a good hike! Anywhere from Runyon to Temescal Canyon. Los Angeles has such an amazing art scene too. Hauser & Wirth is a must stop while downtown. It’s located in an old warehouse that is the perfect backdrop for art and food. Manuela, the restaurant there, is next level. While downtown also visit Little Tokyo and MOCA. There’s also a frozen yogurt place there called Bae – get the charcoal pineapple flavor! My other favorite one-two art/food punch is Various Small Fires followed by lunch at Petit Trois. Go for the art and stay for the food; you can’t go wrong. If venturing further west, then Gjelina for lunch on Abbott Kinney followed by The Getty Villa then Nobu or Little Beach House Malibu for dinner. So basically, come to eat, see art and exercise. If that doesn’t sound fun, I’m probably not the best person to visit.
The Shoutout series is all about recognizing that our success and where we are in life is at least somewhat thanks to the efforts, support, mentorship, love and encouragement of others. So is there someone that you want to dedicate your shoutout to?
I’ve been fortunate in my career to be mentored by two amazing women. Jillian Roscoe at ID-PR and Suzanne Fritz at Warner Bros. They’re smart, natural-born leaders under whom I was lucky to work. Without their guidance and expertise, I wouldn’t be the person I am today.
Michel de Adder (for the cartoon)