Thank you to the Illinois legislature, and to State Senator Laura Fine and State Representative Robyn Gabel for acknowledging September 7th as World Duchenne Awareness Day! This recognition helps raise awareness of #Duchenne and #Becker and the continued need for research and support. We also want to thank all the advocates who have asked their state governors or local leaders to recognize this day with proclamations or by lighting up landmarks in red. Your efforts are helping us fight for every future! #DuchenneAwareness #WDAD2024 (Pictured: PPMD's Illinois State Advocacy Day and Livingston, NJ Advocates securing a proclamation with the Township Council)
Parent Project Muscular Dystrophy
Non-profit Organizations
Washington DC, New York 3,711 followers
Let's fight for every future. #PPMDeveryfuture #EndDuchenne
About us
Parent Project Muscular Dystrophy fights to end Duchenne. We accelerate research, raise our voices to impact policy, demand optimal care for every single family, and strive to ensure access to approved therapies.
- Website
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http://ParentProjectMD.org
External link for Parent Project Muscular Dystrophy
- Industry
- Non-profit Organizations
- Company size
- 11-50 employees
- Headquarters
- Washington DC, New York
- Type
- Nonprofit
- Founded
- 1994
- Specialties
- Research, Advocacy, Care, Education, Community, Engagement, Duchenne, and Muscular Dystrophy
Locations
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Primary
1012 14th NW
Suite 500
Washington DC, New York 20005, US
Employees at Parent Project Muscular Dystrophy
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Alpa Khushalani
Research Home Health | Clinical Trials Expertise | Rare Disease Advocate | Duchenne Mom | Community Outreach
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Megan (Raspa) Freed
Public Health Data & Engagement Strategist
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John Killian
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Nicole Herring
Vice President, Development & Community Engagement at Parent Project Muscular Dystrophy
Updates
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Since its launch in 2014, World Duchenne Awareness Day has grown into a powerful global movement. This year, the official recognition of September 7 as World Duchenne Awareness Day by the United Nations marks a significant milestone in the fight to #EndDuchenne. Thank you!! #WDAD2024
Duchenne muscular dystrophy is a genetic disorder causing progressive muscle degeneration and weakness. Symptoms typically begin in early childhood and include difficulty walking, running & jumping, frequent falls, and trouble climbing stairs. As the disease progresses, it can ultimately affect breathing and heart function. Saturday’s first-ever World Duchenne Awareness Day stresses the importance of advocating for the rights, inclusion and well-being of people living with this condition. https://lnkd.in/ePnjCmNg
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Today, September 7, is World Duchenne Awareness Day! With the theme "Raise Your Voice for Duchenne," this year’s focus is on creating a more inclusive world where individuals living with #Duchenne and #Becker can thrive. As we mark this historic moment—now officially recognized by the United Nations—let’s continue our fight to accelerate research, raise our voices to impact policy, demand optimal care for every single family, and strive to ensure access to approved therapies. Let’s show the world the power of this incredible community! How do you raise your voice for Duchenne? Share your story today, raise awareness, and help us keep fighting for every future. #WDAD2024
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In honor of World Duchenne Awareness Day and Duchenne Action Month, our "PPMD Advocacy: Raising Our Voices in 2024 and Beyond" webinar highlighted the remarkable strength and unity of our community. With insights from advocates in the #Duchenne and #Becker community, the event showcased our collective efforts in raising our voices to promote the rights, inclusion, and well-being for those with Duchenne and Becker. Read the full recap and learn how you can take action today to help us continue fighing for every future: https://lnkd.in/eexyEnBq #WDAD2024 #DuchenneActionMonth
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Tomorrow, September 7th, is World Duchenne Awareness Day! This year, we are emphasizing the importance of amplifying voices to advocate for the rights, inclusion and well-being of people living with #Duchenne. Join the fight for every future by sharing how you raise your voice for Duchenne, or creating your own Facebook fundraiser or DIY Fundraising to End Duchenne event. Set a goal and share with your friends throughout September to raise awareness and funds for PPMD. #WDAD2024
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The PPMD community raises our voices for #Duchenne through our advocacy efforts. We know that the burden of cost borne by individuals and families affected by Duchenne can be great. The federal Supplemental Security Income (SSI) program provides monthly assistance payments, but only for individuals with no more than $2,000 in resources. Due to the current asset limitations, it is nearly impossible for many SSI eligible individuals to achieve their goals of working, saving, and even getting married without fear of losing their benefits. To address this barrier and raise our voices for Duchenne, PPMD advocates in support of the SSI Savings Penalty Elimination Act, which increases allowable assets for SSI beneficiaries and eliminates the marriage penalty. How do you raise your voice for Duchenne? Learn more about PPMD advocacy here: https://lnkd.in/dMt3NHk3 #DuchenneActionMonth
PPMD Advocacy
https://www.parentprojectmd.org
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Tune in TOMORROW at 1 PM ET to hear from PPMD Advocates from throughout the #Duchenne and #Becker community about PPMD’s advocacy efforts in its 30th anniversary year, highlighting key policy achievements and ongoing work to promote rights, inclusion, and well-being for those with Duchenne and Becker. Register now: https://lnkd.in/ebmQQfnW #DuchenneActionMonth
Webinar: PPMD Advocacy - Raising Our Voices in 2024 and Beyond
https://www.parentprojectmd.org
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We are thrilled to announce the launch of PPMD’s Newborn Screening Action Center, a powerful resource designed to both educate and empower you as we work to ensure that every baby, in every state, has equal access to timely diagnosis and care. The Newborn Screening Action Center is more than a resource—it’s a call to action. PPMD is committed to ensuring that every family has the support they need from Day One. This resource is particularly timely as we enter September, which is both Duchenne Action Month and Newborn Screening Awareness Month. As we approach World Duchenne Awareness Day on September 7th, we encourage everyone to get involved, spread the word, and support these efforts. Together, we can make a difference. How do you raise your voice for #Duchenne? https://lnkd.in/djnZj4kH #DuchenneActionMonth #WDAD2024
Introducing PPMD’s Newborn Screening Action Center: A Hub for Advocacy and Education
https://www.parentprojectmd.org
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Join PPMD on Wednesday, September 11th at 1-2pm ET for a webinar on Advocating for a Successful School Year. Panelists will discuss what you need to know about IEP and 504 plans, educational rights, and tips on how to communicate and work with the school to ensure your child with #Duchenne or #Becker has a safe and successful school year. Register today and submit questions in advance: https://lnkd.in/dxyQ99wY #DuchenneActionMonth
Webinar: Advocating for a Successful School Year
https://www.parentprojectmd.org
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Dyne Therapeutics has announced positive new clinical data from its ongoing Phase 1/2 DELIVER trial of DYNE-251 in patients with #Duchenne who are amenable to exon 51 skipping demonstrating high levels of dystrophin expression and meaningful improvements in multiple functional outcome measures. Learn more: https://lnkd.in/e6R264cP
Dyne Therapeutics Announces Positive New Clinical Data from Phase 1/2 DELIVER Trial of DYNE-251 in Duchenne
https://www.parentprojectmd.org