It’s the official start of summer. And for our community, it’s that time of year when we come together with caregivers, scientists, and industry for PPMD’s Annual Connect Conference. This year’s agenda is quite astonishing, reflecting the vast number of therapies in the works, the updates to care, our increased presence in Congress, and a panel series that will dissect the clinical trial process from all points of view. We will also host a meeting prior to the Connect Conference, a roundtable meeting called Transforming Duchenne Care. We have gathered leadership from top medical institutions, neuromuscular experts, and patient representatives to discuss in an open forum the ideal configuration, features, services, and structure of state-of-the-art family centered care for patients with Duchenne. PPMD is proud of the research we continue to fund, and supporting potential therapies is one of our top priorities. But we also know the importance of improving care, educating the medical community, raising awareness, and maintaining federal support. Looking at this month’s newsletter, I’m proud of what this community continues to achieve, working together to end Duchenne. I’m also proud of one young woman who has made her voice heard in Washington the last several years: Elizabeth Heller. Elizabeth is the rarest of the rare – a woman with Duchenne. And she’s telling her story and using her voice so that people know that while Duchenne tends to predominantly affect men, woman can be affected. We are a community of fiercely passionate people and exceptions to any sort of norm. We are a community of people that will get what we want…we will end Duchenne.
I look forward to seeing many of you in Florida and hope the rest of you enjoy the official start of summer!
P.S. Many of you have emailed me, asking what I’m up to or if PPMD was represented at a certain meeting. Each month, I will try to bring you a brief recap of some of the places we’ve been and what we’ve been doing!
Where we are and what we’re doing
The end of April and May were particularly busy. June is shaping up to look the same!
The last several weeks:
Pat Furlong, Founding President, CEO
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