Parent Project Muscular Dystrophy (PPMD)
@ParentProjectMD
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#HonorEveryJourney #EndDuchenne
Washington, D.C.
Joined June 2009
🎉 BREAKING NEWS! #Duchenne #MuscularDystrophy is now included on the Recommended Newborn Screening Panel, making early diagnosis & care possible for newborns across the U.S. #NewbornScreening @MDAorg
https://t.co/94BvkD1fEf
@MDAorg
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đź’Ş We will continue to lead newborn screening efforts with the goal of ensuring that this recommendation is implemented effectively and equitably across all 50 states. https://t.co/mnGnyLxm40
parentprojectmd.org
Today marks a monumental victory for the Duchenne community. The U.S. Department of Health and Human Services (HHS) has officially added Duchenne to the Recommended Uniform Screening Panel (RUSP)—the...
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Today marks a monumental victory for the #Duchenne community with the addition of Duchenne to the Recommended Uniform Screening Panel (RUSP). For more than a decade PPMD has been leading efforts for Duchenne #newbornscreening.
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Thanks to the generosity of John Owen’s Adventure, Gail & David Hofstein, the Alex Rezkalla Foundation, and other community members, your gift to help PPMD #HonorEveryJourney will be matched through midnight on 12/31! Give today and DOUBLE your impact! https://t.co/Klf8OleqdY
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The Duchenne and Becker landscape is evolving rapidly, and guided by our promise to #HonorEveryJourney, PPMD is ensuring that every voice and everyone at every stage of the disease is represented in our progress. Learn more and give today:
parentprojectmd.org
For more than three decades, Parent Project Muscular Dystrophy (PPMD) has been committed to bringing therapies closer to, and improving care for, every person living with Duchenne and Becker muscular...
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For more than three decades, PPMD has been committed to bringing therapies closer to, and improving care for, every person living with #Duchenne and #Becker #musculardystrophy.
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Anthropic’s latest model, Claude Opus 4.5 is now available in Microsoft Foundry. Microsoft Foundry offers the widest selection of advanced and frontier AI models of any cloud.
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Today’s the day to have your gift DOUBLED for #GivingTuesday! Thanks to the Foundation to Eradicate Duchenne, every donation, up to $25,000, will be doubled, making your contribution TWICE as impactful for the #Duchenne and #Becker community. https://t.co/wzByDw7T1D
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Calling all tweens ages 9–14 living with #Duchenne or #Becker! Join Pat Moeschen and the PAAC for a Halloween-themed evening of trivia, games, and laughs on October 21 from 6:30–7:30 PM ET. Register today and don’t miss the fun: https://t.co/mjMd2AeJVh
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Recently @aviditybio announced a positive meeting with FDA regarding its upcoming BLA submission of del-zota. The timing has been updated to Q1 2026 to ensure the FDA receives additional data to support the chemistry, manufacturing, and controls package.
parentprojectmd.org
Avidity Biosciences, Inc. has announced the completion of a positive pre-Biologics License Application (BLA) meeting with the U.S. Food and Drug Administration (FDA) regarding its upcoming BLA...
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âť—NEW from World Muscle Society 2025âť—Catch up on sessions covering psychological care in neuromuscular diseases and advances in therapies and drug development, highlighting exciting progress in the delivery of dystrophin restoration therapies. Learn more:
parentprojectmd.org
Each year, the World Muscle Society (WMS) Annual Congress brings together the best minds in neuromuscular research, clinical care, patient advocacy, and industry. The meeting offers a dynamic...
PPMD is sharing updates from WMS in the coming days, starting with reflections from Pat Furlong on the event, PPMD’s attendance each year, and the role of the patient voice in these conversations. Hear from Pat and stay tuned for more updates from WMS:
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PPMD is sharing updates from WMS in the coming days, starting with reflections from Pat Furlong on the event, PPMD’s attendance each year, and the role of the patient voice in these conversations. Hear from Pat and stay tuned for more updates from WMS:
parentprojectmd.org
Each year, the World Muscle Society (WMS) Annual Congress brings together the best minds in neuromuscular research, clinical care, patient advocacy, and industry. The meeting offers a dynamic...
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Watch the recording for important information about how vaccines work, the role of vaccines in protecting lung health, and specific considerations for steroids, gene therapy, and clinical trials. Learn more:
parentprojectmd.org
The PPMD team was recently joined by three clinical experts, Dr. Anne Pham-Huy (Pediatric Infectious Diseases Specialist, Clinical Immunologist, and Chair of Immunize Canada), Dr. Jane Taylor...
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The PPMD team was recently joined by three clinical experts, including an immunologist, a pulmonologist, and a neuromuscular neurologist, for a discussion on vaccines and vaccination considerations in individuals with dystrophinopathy.
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Join PPMD on 10/16 at 1 PM ET for the first in our two-part #Becker #MuscularDystrophy webinar series! We'll introduce Becker, the role of genetic counseling, considerations related to family history and genetic variants, as well as available resources
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Read PPMD’s Patrick Moeschen’s latest blog post to hear about his experience attending the event and speaking before representatives from countries around the world, raising awareness for our community and turning hope into action:
parentprojectmd.org
On Friday, September 5th, 2025 I had the honor of speaking at the United Nations to raise awareness and turn hope into action for World Duchenne Awareness Day. The Permanent Representative of the...
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We have long believed in the power of advocacy, innovation, and collaboration to advance research and care in #Duchenne, and we are proud to be long-standing partners of FED. We’re honored to sponsor this year’s event and help FED mark this milestone.
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As we look forward to celebrating the 25th Annual Dining Away Duchenne event in Washington, DC, next week, PPMD congratulates our allies at the @DuchenneMD (FED), and Joel and Dana Wood on this momentous event and their dedication to this community.
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PPMD Together: Charlotte is right around the corner and there’s still time to register to join us September 19-20 in the Queen City! Learn more about what you can expect and register today:
donate.parentprojectmd.org
Introducing the PPMD Together regional meeting: a meeting designed to be responsive to the needs of the community in an ever-changing landscape. The PPMD Together regional meeting will have a focus...
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On #WDAD2025 and every day, we celebrate and say thank you to family members throughout our community for being there for all the small, big, joyous, and most challenging times. How does your family find and/or provide strength when life feels overwhelming?
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