Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne, commemorated its 30th anniversary with the “Investing in Every Future” celebratory event on November 14, 2024, in New York City. With some 200 attendees, this meaningful gathering honored three decades of progress and the resilience and spirit of the Duchenne community, and demonstrated the organization's commitment to fighting for every future as PPMD continues to lead the fight to end Duchenne.
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This milestone year for PPMD has been marked by significant accomplishments and impactful initiatives. The “Investing in Every Future” event served as the culmination of PPMD's 30th anniversary, a year that also included the launch of the PPMD Together regional meeting series, designed to connect families, share knowledge, and strengthen the community's collective voice. PPMD hosted its renowned Advocacy Conference in March, which included a first-ever Town Hall featuring a panel discussion with an adult living with Duchenne, parents of children with Duchenne, and members of the FDA to help inform the next steps in PPMD's patient preference work. The PPMD Annual Conference, which serves as a pivotal platform for the community to connect and shape a future where every individual affected by Duchenne and Becker can thrive, also had a record-breaking number of in-person attendees, further establishing it as the seminole global conference for Duchenne and Becker.
The “Investing in Every Future” event showcased an exclusive photography exhibit by award-winning photographer Rick Guidotti. Guidotti is the founder and director of POSITIVE EXPOSURE, a non-profit organization that promotes a more inclusive, equitable and compassionate world for individuals and communities at risk of stigma and exclusion through photography, film, community storytelling, education, and advocacy. The exhibit honored the resilience and beauty of individuals within the Duchenne and Becker community, serving as a powerful reminder of PPMD's mission to end Duchenne.
“Celebrating our 30th anniversary is more than just marking the passage of time,” said Pat Furlong, PPMD Founding President and CEO. “It's about acknowledging the profound achievements we've made together as a community, reaffirming our commitment to fighting for every future, and ushering in a new era for the next generation.”
“We are grateful for the families who have been with us since the beginning and those who are just finding their way to PPMD, the dedicated and compassionate healthcare providers, our industry partners and researchers developing the treatments of the future, and our advocates across the country and across the globe. Rick's beautiful photos capture just a few of the countless individuals who have contributed immensely to the progress and hope we see today, and help us educate and advocate for all people living with Duchenne and Becker,” said Furlong.
As PPMD reflects on 30 years of transformative work, the organization remains steadfast in its mission to accelerate research, shape policy, advance care, empower families, and connect the Duchenne and Becker community.
PPMD thanks the generous companies, foundations and individuals who sponsored this celebration: Alex Rezkalla Foundation, Austin's Hope, Capricor Therapeutics, The Chilcutt Family, Faegre Drinker Biddle & Reath,ITF Therapeutics , Kate Therapeutics, The Killian Family, Kindness Over Muscular Dystrophy, The Joti Family, RegenxBio, The Rice Family, Sarepta Therapeutics, Vertex Pharmaceuticals and VOZ Advisors. Your Part Time Controller.
ABOUT PARENT PROJECT MUSCULAR DYSTROPHY
Duchenneis a genetic disorder that slowly robs people of their muscle strength. Parent Project Muscular Dystrophy (PPMD) fights every single battle necessary to end Duchenne.
We demand optimal care standards and ensure every family has access to expert healthcare providers, cutting edge treatments, and a community of support. We invest deeply in treatments for this generation of Duchenne patients and in research that will benefit future generations. Our advocacy efforts have secured hundreds of millions of dollars in funding and won seven FDA approvals.
Everything we do-and everything we have done since our founding in 1994-helps those with Duchenne live longer, stronger lives. We will not rest until we end Duchenne for every single person affected by the disease. Join our fight against Duchenne at EndDuchenne.org. Follow PPMD on Facebook, Twitter, Instagram, and YouTube.
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SOURCE Parent Project Muscular Dystrophy (PPMD)
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