Courtney Dion
Courtney Dion is the President and co-founder of The Dion Foundation, a non-profit organization established in 2023 with a mission to raise awareness and fund research for rare and ultra-rare genetic diseases affecting children, including Limb-Girdle Muscular Dystrophy (LGMD2C). Following the diagnosis of two of her three children with this devastating condition, Courtney, alongside her husband Joe, founded the foundation to address the urgent need for research and treatment development for these ultra-rare diseases.
With a background as a registered nurse, Courtney brings a deep commitment to patient care and advocacy to her role. She actively engages with the LGMD community, collaborates with non-profit organizations, and works with pharmaceutical companies and patient steering committees to elevate the patient voice. Additionally, Courtney advocates for supportive legislation at both local and federal levels to improve the lives of those affected by rare diseases. Her dedication and expertise drive the foundation's efforts to advance research and advocate for meaningful change in the field of rare disease.
Courtney@thedionfund.org
joe Dion
Joe Dion is the co-founder of The Dion Foundation, a non-profit organization dedicated to raising awareness and funding research for rare and ultra-rare genetic diseases affecting children, with a focus on Limb-Girdle Muscular Dystrophy (LGMD2C). Established in 2023, The Dion Foundation was born out of Joe’s personal journey as the father of two children recently diagnosed with LGMD2C. Driven by the mission to find a cure, Joe and his wife, Courtney, established the foundation with a clear objective: to fund research and accelerate the development of potential treatments and cures.
As a seasoned CEO and fourth-generation retailer of Dions Wine and Spirits, a prominent family business in the Greater Boston area, Joe has leveraged his extensive business acumen to drive the foundation's initiatives. His strategic leadership skills, honed over 20 years of expanding and innovating within his family business, are now channeled into advocacy for rare diseases. Joe has successfully facilitated fundraising efforts, collaborated with global leaders in neuromuscular research, and advocated for supportive legislation at both local and federal levels.
Joe is committed to advancing the fight against rare diseases, using his platform to raise awareness and foster collaboration within the community, biotech industry, and legislative bodies. His dedication to the Dion Foundation exemplifies his unwavering commitment to improving the lives of those affected by genetic disorders.
Joe@thedionfund.org
CHRIS BURGOYNE
Chris Burgoyne joined the Dion Foundation Board of Directors at its founding in 2023. With more than 15 years of experience in political and government affairs, he has worked across campaigns, government, trade associations, and the corporate sector. Advocacy has always been his passion, and he brings that experience to help the Dion Foundation strengthen its influence through strategic engagement.
His background spans advocacy, legislative affairs, and campaigns at the federal, state, and local levels, including high-profile U.S. Senate and gubernatorial operations. He has led initiatives focused on advocacy strategy, political action committee (PAC) growth, and coalition building, applying these skills to support organizations committed to making a lasting impact.
On the Board, Burgoyne focuses on building coalitions and advancing advocacy efforts that raise awareness of rare and ultra-rare genetic diseases, fund research for treatments and cures, and ensure that no child is left behind.
BRIAN BAILEY
Brian joined the Dion Foundation alongside his wife Chrissy following the diagnosis of their daughters with LGMD2C in the summer of 2025. While the news was life-altering, it sparked a deep resolve in Brian to change the trajectory of the disease—not just for his own children, but for all families affected by LGMD. Through his work with the foundation, he is committed to advancing research and funding life-changing treatments for children living with this ultra-rare condition.
Brian brings a strong background in finance and investing to his role at the foundation. He currently serves as Senior Vice President of Client Advisory at Jordan Park, where he provides investment management and strategic financial advice to a select community of individuals, families, and institutions. Through his experience, Brian has seen the impact that motivated families and individuals can have on behalf of those facing challenges like rare disease.
Now, Brian channels his expertise and unwavering determination into his work with the Dion Foundation—driven by the singular purpose only a parent can feel: securing a brighter future for his daughters and all children facing an LGMD diagnosis.
CHRISSY BAILEY
Chrissy’s journey with the Dion Foundation began in the summer of 2025, after both of her daughters were diagnosed with LGMD2C, an ultra-rare form of muscular dystrophy. She and her husband Brian joined the foundation with a mission: to raise awareness and accelerate funding for research and treatment—so that no family facing this diagnosis ever hears the words, “There’s nothing we can do.”
With a professional background in business and education, Chrissy stepped away from the workforce to focus on raising her children. During that time, she dedicated her skills to community and nonprofit work—founding The 143 Exchange, a local children’s clothing swap, and serving as Co-President of the Exeter Elementary PTO.
Now, Chrissy brings her experience and passion to the Dion Foundation in her most meaningful role yet: working to create a better future for her daughters and for all families affected by LGMD2C.
ALEXA COLELLA
Immediately after Charlotte’s diagnosis, Alexa began scouring the medical research for information on LGMD2C. It is hard to describe how little of it there was. However, we connected with other families with children with LGMD2C and started working towards making Charlotte’s life as wonderful as we possibly could, knowing that gene therapy was a promising possible treatment on the horizon. While we raised money, raised awareness, and participated in medical research, and we watched as disappointment after disappointment came. Exciting trials didn’t materialize and we kept being told “next year”
That’s when the Dions found us. I was burnt out, tired, and almost out of hope. They brought new ideas and energy to a space that has always felt like an afterthought and made possible what I, after living with disappointments year after year, never thought possible.
“Never giving up, together” is how we will fight to bring treatments to every kid with LGMD2C.
I am committed to using all i have to give children with LGMD2C a better future. One where they make the choices for themselves. One where they get to plan families and build their own lives. And one where they have the promise of a future free of limitations.
My background is in Fine Arts, but I currently work in technology for scientific publishing, with a focus on misinformation, accessibility, and taxonomy.
MAGGIE DIBBLE, FUNDRAISING CHAIR
Maggie Dibble is the proud aunt of two children living with LGMD2C, a devoted registered nurse, and the Fundraising Chair of The Dion Foundation. Since stepping into this role, Maggie has successfully hosted three annual fundraising events, raising more than $200,000 to advance research, treatment, and awareness for children with rare diseases.
Caring for others has always been second nature to Maggie—from her early days as a babysitter and camp counselor, to her 10 years of experience as a nurse supporting women through childbirth and families during life’s most profound moments. Now, as both a mother of two and an aunt to two children with LGMD2C, she brings her compassion, resilience, and advocacy skills to the fight against this devastating disease.
“Nursing has prepared me for the biggest fight yet to come. My drive to care and advocate for those who can’t advocate for themselves has only strengthened. These children—and countless others—need our voice. Their health and future depend on it,” Maggie shares.
Maggie is deeply committed to improving the lives of those affected by rare neuromuscular disorders through advocacy, education, and collaboration. She is leading initiatives to equip medical professionals with resources and knowledge about LGMD, while also building partnerships across the rare disease community to expand awareness and impact.
maggie@thedionfund.org
JULIE RYAN - Fundraising and creative director
Julie Ryan wears many hats, but her most cherished role is that of aunt to Peter and Maggie Dion. Since their diagnosis with LGMD2C, Julie has dedicated a large part of her life to supporting their health and fighting for a brighter future—not only for them, but for all children living with this devastating disease. She believes deeply that love can conquer all, and it’s this love that drives her tireless work with the Dion Foundation.
In addition to her role with the foundation, Julie balances a busy career in the City Council Office of the City of Boston and runs her own photography business, where she captures life’s most meaningful moments for families. She pours the same care and creativity into her work for the Dion Foundation, leading fundraising campaigns, branding, PR, and social media with unmatched dedication.
Through every event, campaign, and initiative, Julie channels her love for her niece and nephew into action—helping to raise awareness, inspire others, and ensure that children like Peter, Maggie, and so many others with LGMD2C have the chance to grow, thrive, and share their light with the world.
Julie@thedionfund.org