We are thrilled to feature the Dion Foundation in our “What Inspires Us” series. Established in January 2023, this non-profit organization is on a mission to fund research and find a cure for children living with rare diseases. Inspired by their own children’s diagnosis with Limb Girdle Muscular Dystrophy (LGMD, type 2C), Joe and Courtney Dion recognized the limited resources available for this rare condition. The Dion Foundation aims to collaborate with various stakeholders to accelerate drug development and improve outcomes for children with rare diseases, including LGMD 2C. Join us as we explore the inspiring work of the Dion Foundation and their unwavering commitment to making a difference in the lives of these children.
If you are interested in learning more about the amazing work of Dion Foundation you can visit them online at www.thedionfund.org. You can also send an email to courtney@thedionfund.org or call 617-291-8704!
Photos were taken by Julie Ryan.
Interview with Courtney Dion from The Dion Foundation:
Describe what you do? How long have you been doing this?
The Dion Foundation – established January 2023, a non-profit 501(c)(3) organization with a simple mission: fund, research and find a cure for children living with a rare disease. After their two children, Peter 10 and Maggie 6, were diagnosed with a rare form of muscular dystrophy – Limb Girdle Muscular Dystrophy (LGMD, type 2C) – Joe and Courtney Dion quickly learned that there was limited research, treatment and therapy development, and patient advocacy efforts for this rare disease. The Dion Foundation will focus on working with other patient advocacy groups, policy makers, industry leaders, legislative officials and medical professionals to help accelerate drug development for rare diseases that affect children such as LGMD 2C.
What makes you different?
Our mission at the Dion Children Foundation for Rare Disease is to increase awareness of rare and ultra-rare genetic diseases such as Limb-Girdle Muscular Dystrophy, that affect children with the intention of allocating funds for research and development of potential treatments and cures of these devastating diseases. Our belief at The Dion Foundation is that no child should be left behind. Our children matter, and so do the lives of so many other children affected by rare genetic diseases.
What are some things you value?
Patient advocacy is crucial for treatment development for rare and ultra-rare diseases. Patient voice is imperative for pharmaceutical development and regulation by the FDA.
What do you want to hear from the community you serve?
Our mission at The Dion Foundation is that every child matters. Rare or ultra-rare diseases deserve the same attention and focus from pharmaceutical companies, despite the “profitability” of the treatment. Rare diseases affect millions of people in the United States alone. Our goal is to find answers, work with other advocacy groups, and shift this paradigm – to give those living with rare disease a voice, and to be heard.
What’s your personal story?
Peter & Maggie Dion were each born with 10 perfect toes, 10 perfect fingers and were discharged from the hospital with a clean bill of health. In the fall of 2022, at the age of 9, Peter was diagnosed with Limb-Girdle Muscular Dystrophy type 2C.
Although Muscular Dystrophy is a genetic disease and he was born with it, it wasn’t until Peter’s parents noticed his frequent falls that this devastating news hit their worlds like a meteorite. Subsequently, a few weeks later, his little sister Maggie was diagnosed at the age of 6.
Peter & Maggies type of Muscular Dystrophy (LGMD2C) is considered one of the severe forms of childhood-onset muscular dystrophy. With a Duchenne-like progression, it is generally very debilitating. Typically, patients are wheelchair bound by teenage years. By late twenties, the disease will affect their breathing and heart muscles.
While we are still navigating the devastating and unknown world of living with a serious rare disease, we have harnessed our grief and fear into fierce and unwavering advocacy for our children: The Dion Foundation.
What’s the biggest factor that has helped you succeed?
We are new to the space of patient advocacy, but we are fueled with passion and a relentless pursuit of answers for our children. Nobody will fight for their child like a parent will.
What is the best advice you can give to others?
Advocate for yourself. Joe and Courtney spent a few weeks grieving over these diagnoses, but wasted no time in pursuing answers: unsatisfied with the regimen of Boston hospitals, they sought out medical care in Ohio at the hub of gene therapy and muscular dystrophy. They used their networks to connect with anyone who could help provide any insight or information in this field. They immediately got involved with other patient advocacy groups in the LGMD community to learn as much as possible. A treatment will not come knock on your door – you must go to any ends of the earth to find it. The Dions haven’t found it yet, but they are nowhere near done searching, and have tremendous hope for the future.
If you could start all over again, what would you do differently?
This is a club no parent ever wants to be part of. The worst news, “your child is sick ” is something that will forever be ingrained in our minds. However, we believe that God has given us these beautiful, perfect angels to fight for, and their resilience and strength will inspire us every single day to not take no for an answer.
At the end of the day, what puts a smile on your face?
Our beautiful children: Peter 10, Luke 8 and Maggie 7.
They will fuel us to march forward, yet remind us to slow down and soak up every moment. Each day is a gift with them, and we are incredibly blessed to share this life with these three bright lights.
What Inspires Us: Describe a way that you help your community in a positive way?
We will strive to create change in the rare disease community. We will strive to be a source of information and resources to those who have just received a diagnosis like ours. We will strive to fund valuable research to help “cure” these debilitating diseases such as cellular therapy, gene editing and muscle regeneration. We will strive to work cohesively with other rare disease advocacy groups to help facilitate treatment developments and access to care. We will strive to find a cure, every day.
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