Parent Project Muscular Dystrophy Hosts 25th Annual Conference in Orlando
Leading Duchenne Organization Returns to Site of First Conference in 1994
HACKENSACK, N.J., June 26, 2019 /PRNewswire/ -- Parent Project Muscular Dystrophy (PPMD), a nonprofit organization leading the fight to end Duchenne muscular dystrophy (Duchenne), will mark their 25th anniversary tomorrow with the start of their Annual Conference, this year in Orlando, Florida. Founded in 1994 by a group of parents and grandparents, and led by Founding President and CEO Pat Furlong, PPMD is the largest most comprehensive nonprofit organization in the United States focused on ending Duchenne.
Furlong is excited about this year's Conference and believes the Duchenne community is at a pivotal moment. "Duchenne is a progressive, multi-system disorder that needs to be treated with a progressive attack plan. We have learned over time that it will take a combination of therapies to treat Duchenne. We know that now," Furlong said. "We also know that the fight won't end when we have treatments. We have to make sure that our loved ones can access these treatments and that insurance companies will cover them. In my 25 years at PPMD, I realize that this fight is an evolution – as our understanding of Duchenne evolves, so does our strategy to end it."
Since their first meeting in 1994, PPMD has been convening families with researchers, clinicians, industry partners, advocacy organizations, and most importantly, people with Duchenne and their families at the largest Duchenne-specific conference in the U.S. This year's agenda promises to be the organization's most comprehensive to date, featuring presentations and panels discussing:
- Managing care at every age of Duchenne
- Understanding Duchenne mutations and disease course
- Duchenne clinical trials, both ongoing and upcoming & advancements and the timelines
- Gene therapy and where this research is heading
- Accessing therapies and the future of treatments
- Impacting research, trials, and treatment through advocacy and collaboration
- Encouraging independence and social integration
- Parent to parent real life information – managing your family
- Managing behavior issues in Duchenne
- Living with Duchenne – those living with Duchenne spend time with and learn from our PPMD Adult Advisory Committee about everyday life
This year PPMD will add an interactive Town Hall Forum in which all attendees and presenters are invited to discuss what matters most to them. PPMD will also offer a variety of educational and social activities for teens and adults living with Duchenne, as well as the return of Kids Track, featuring more great experiences while parents attend the regular conference sessions.
Furlong is proud of the fact that PPMD's Annual Conference, like the organization's strategy to fund Duchenne research and attack it from every angle, continues to evolve based on the priorities and concerns of the community. "Parent Project Muscular Dystrophy is a community-wide effort that we strive to help lead, incorporating the priorities and passion of every stakeholder. Our community has never been stronger. It continues to grow and strengthen and is a force of nature in the international rare disease community. We have become a model for other diseases and a case study in how parent advocacy can unite and get things done. We are proud to convene our community for this week's 25th Annual Conference. Our passion for our mission has never been greater – we will end Duchenne."
If you are unable to attend this year's meeting, all general sessions from PPMD's 25th Annual Conference can be live streamed. To learn more about the Conference, visit our website.
About Parent Project Muscular Dystrophy
Duchenne is a fatal genetic disorder that slowly robs people of their muscle strength. Parent Project Muscular Dystrophy (PPMD) is the largest most comprehensive nonprofit organization in the United States focused on finding a cure for Duchenne—our mission is to end Duchenne.
We demand optimal care standards and strive to 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 two 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 and follow PPMD on Facebook, Twitter, and YouTube.
SOURCE Parent Project Muscular Dystrophy
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