In a world that often buzzes with the hustle and bustle of daily life, it's easy to miss the challenges faced by individuals with Down syndrome and their families. However, there are those among us who not only see these challenges but are determined to make a difference. One of those people is Johnny Byrne, an endurance sports enthusiast and passionate founder of The Agape Fund
The Agape Fund—an incredible organization with a mission to support individuals with Down syndrome and Down syndrome Regression Disorder (DSRD).
In this article, we are doing a deep dive into what DSRD is, as well as getting to know The Agape Fund and the impactful work they're doing for those affected by Down syndrome regression disorders.
DSRD is a rare but significant aspect of Down syndrome. It typically emerges during childhood or adolescence and is characterized by the devastating loss of previously acquired skills and abilities. Previously high-functioning individuals with Down syndrome may suddenly lose their ability to communicate, dress or feed themselves, use the bathroom, or even sleep [ 1
1]. A loss of social skills, communication, and even motor skills makes it an emotionally taxing journey for individuals with Down syndrome and their families.
During our conversation, Johnny opened up about how DSRD has touched his own family:
"I have a younger brother with Down syndrome. Around my junior year of college, Thomas started going through a regression disorder. This happened as he was finishing high school, and all of his friends were going to college. Tom started becoming increasingly lonely and got very isolated. It was hard for him to express himself. All of the behavioral therapy, the schooling, and the skills he had developed slipped away."
Once thought to be a psychiatric condition, or misdiagnosed as early-onset Alzheimer’s or late-onset autism, there is now growing evidence that Down syndrome regression may be a potentially treatable inflammatory condition [ 1 Children's Hospital of Los Angeles
1]. Researchers, like Thomas’s doctor, Dr. Jonathan Santoro of
Children's Hospital of Los Angeles, are working diligently to advance the science and develop therapies that can improve the lives of those affected.
Inspired by the struggles faced by his brother Thomas, Johnny combined his passion for being active with his desire to help his brother and make a difference. In 2021, he trained for and completed his first Ironman while raising a staggering $63,000 for the Ironman Foundation
Ironman Foundationand Children’s Hospital of Los Angeles in support of DSRD.
This monumental achievement laid the foundation for the creation of The Agape Fund
The Agape Fund, a donor-advised fund committed to channeling donations into medical research focused on Down syndrome and DSRD. As of May 2023, they've raised nearly $128,000, with the majority supporting research into Down syndrome Regression Disorder at Children’s Hospital of Los Angeles.
The Agape Fund members are a closely-knit community that shares Johnny’s passion and commitment to this cause and the personal pursuit of endurance achievements. Unwavering dedication, collaboration, and support are the cornerstones of their success. Johnny gave us a glimpse into their rigorous training regimen as they prepare for their upcoming race, Ironman 140.6 Arizona
Ironman 140.6 Arizona, scheduled for November 2023:
"This year, we have eight people, including myself, racing and fundraising—an amazing achievement. Despite being virtual, we have bi-weekly calls to provide mutual support."
Johnny and his teammates maintain an intense training regimen, dedicating approximately 2 to 3 hours each day during the week to strength and cardio workouts, on top of their full-time jobs. Weekends typically entail 4-6 hours of biking, cycling, and/or swimming, all aimed at pushing (and improving) their endurance boundaries.
It’s not all just nutrition and training, though. Johnny also highlighted the invaluable mentorship provided by experienced Agape Fund members to newcomers, especially those new to Ironman races. "We all put time in to help them think through their nutrition and manage their training load,” he said.
Johnny first crossed paths with Elo Health co-founder, Ari Tulla Smart Supplements Smart Protein
Ari Tulla, while still in college at Berkeley, Their friendship was fueled by a shared passion for health and philanthropy, and now Elo is honored to support Johnny and his teammates in their training with personalized supplements and recovery protein. Elo’s
Smart Proteinare tailored to their unique training and nutritional needs, enabling them to cope with the rigorous physical demands of training and enhance their recovery between workouts.
Johnny's personalized supplement regimen includes turmeric to help combat training-related inflammation, while his Smart pea protein contains boosts like oat powder for carbohydrate replenishment, branched-chain, and essential amino acids for muscle recovery, electrolytes for hydration, probiotics for digestion, and multivitamin to help cover general nutrient gaps. Elo Smart Supplements and Protein aid in post-workout recuperation, helping Johnny and his teammates to push their limits, recover faster, and minimize the risk of injury.
During peak training, athletes like Johnny can require more than double the protein intake of an average individual
double the protein intake of an average individual. Meeting these nutritional needs can be a formidable challenge. Johnny emphasized the importance of Elo's protein powder in his regimen:
“Having the protein [powder] in between meals helps me make sure I’m getting everything I need protein-wise, which is a lot given the amount I’m training,” Johnny highlighted. “We love the supplements and recovery protein, and we’re really excited to represent Elo.”
You, too, can support the Agape Fund and their ongoing efforts to improve the lives of individuals with Down syndrome and Down syndrome Regression Disorder (DSRD) by making a direct donation Agape Fund website
Agape Fund website. If you're an endurance enthusiast eager to make a meaningful impact, Johnny and teammates invite you to join them in their next endurance race while fundraising for this important cause.
"We're always open to having new people join, people who want to do an endurance race and also support something meaningful,” he says.
Whether you run alongside Johnny and his teammates in their next race or make a financial donation, your contribution can make a substantial difference in the lives of those touched by Down syndrome and DSRD. To learn how you can become involved, please visit TheAgapeFund.org
To Johnny and his teammates, we're cheering you on every step of the way in your upcoming Ironman!
The Agape Fund proves how one person's passion and resolve can truly change lives. Driven by his passion to support his brother Thomas’ struggle with Down syndrome Regression Disorder, The Agape Fund has grown into a close-knit community of individuals wholeheartedly committed to aiding those dealing with Down syndrome Regression Disorder. Their selflessness and determination continue to contribute impactful research funds while increasing hope and awareness for people with Down syndrome and their families. To learn more about The Agape Fund and how you can become involved, please visit The Agape Fund.org
The Agape Fund.org.
Children’s Hospital Los Angeles. (n.d.). Children’s Hospital Los Angeles. https://www.chla.org/blog/news-and-innovation/first-clinical-trial-down-syndrome-regression-disorder