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
Parent Project Muscular Dystrophy
Non-profit Organizations
Washington DC, New York 3,687 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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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
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It's #DuchenneActionMonth! Join PPMD this September as we continue to celebrate the power of this incredible community and amplify voices to advocate for the rights, inclusion and well-being of people living with #Duchenne. There are a variety of simple and powerful actions you can take to help raise awareness and support the fight for every future. Visit our website to download social media graphics, register for our special Duchenne Awareness Month advocacy webinar, and learn how you can get involved this month and year-round. https://lnkd.in/gBrwdzV
September is Duchenne Action Month! - Parent Project Muscular Dystrophy
https://www.parentprojectmd.org
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As we approach World Duchenne Awareness Day, join PPMD for a special webinar, “PPMD Advocacy: Raising Our Voices in 2024 and Beyond,” on Thursday, September 5, 2024, at 1:00 PM ET. PPMD Advocates from throughout the #Duchenne and #Becker community will reflect on 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. There are so many ways you can raise your voice for Duchenne—register today and learn how you can get involved with PPMD’s advocacy efforts: https://lnkd.in/ebmQQfnW
Webinar: PPMD Advocacy - Raising Our Voices in 2024 and Beyond
https://www.parentprojectmd.org
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In an effort to give academic teams the tools they need to better understand, educate, and serve students with #Duchenne and #Becker both in and out of the classroom, PPMD has created a new Masterclass course that provides a brief overview of Duchenne and Becker and how it can impact a child in the classroom. This resource offers considerations as it relates to physical, emotional, cognitive and social needs of the student in an effort to give academic teams the tools they need to ensure children with Duchenne and Becker have a safe and successful school year. Learn more and pass these resources along to the educator teams at your school! https://lnkd.in/eJv_QCa9
PPMD’s Duchenne Professionals Masterclass
masterclass.parentprojectmd.org
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We had so much fun at the inaugural Swing Fore the Future golf tournament earlier this week! The funds raised will play a pivotal role in advancing our efforts to improve the quality of life for all individuals living with #Duchenne and their families. Thank you to former Washington Capitals defenseman Nick Jensen, his wife Jenner, the Capitals, the Monumental Sports & Entertainment Foundation, sponsors, volunteers, and participants who made it such an outstanding success! https://lnkd.in/e3bvVCrY
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Dyne Therapeutics recently joined PPMD for a presentation of clinical data from the DELIVER Trial of DYNE-251 in individuals living with #Duchenne who are amenable to exon 51 skipping. Watch the recording here: https://lnkd.in/eUrwEM8i
WATCH: Advancing DYNE-251 - An Investigational Medicine for Duchenne to Deliver for Patients (Webinar Recording)
https://www.parentprojectmd.org
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PPMD is proud to be part of this year’s Becker Education and Engagement Day, taking place on September 28th, to bring people together to learn about topics relevant to the Becker community, provide the latest research updates, and create an opportunity for those impacted by #Becker to connect in person. The event will cover topics relevant to the Becker community, such as Cardiac Care, Exercise, Mental Wellness, Research and more! Register today to attend the free event at one of the locations: Sacramento, CA, St, Louis, MO, Seattle, WA, Dallas, TX, Pittsburgh, PA, and Orlando, FL. #BEED #becker #BMD #neuromuscular #raredisease #musculardystrophy ImagingNMD Muscular Dystrophy Association UF Health UPMC Edgewise Therapeutics UT Health San Antonio https://lnkd.in/e4H3d2nF
BEED 2024
https://beckereducationandengagement.com
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As the school year kicks off, PPMD is here if you have questions regarding IEP vs 504 plans, how to talk to your child's school about Duchenne/Becker, or transitioning from high school to college. Through the PPMD For You program, you can schedule a one-to-one meeting with an expert member of the PPMD team for personalized support. The School & Education appointments offer an opportunity to get the support and resources you need to make your child's school year as safe and successful as possible. Schedule a one-to-one meeting today: https://lnkd.in/eyST7M3B
PPMD For You: Schedule a One-To-One Meeting for Personalized Support with The PPMD Team
https://www.parentprojectmd.org
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Parent Project Muscular Dystrophy reposted this
Please join Parent Project Muscular Dystrophy and Dyne Therapeutics on Wednesday, August 14, 2024 at 1:00 PM ET for a presentation of clinical data from the DELIVER Trial of DYNE-251 in individuals living with #Duchenne muscular dystrophy who are amenable to exon 51 skipping, first released on May 20th, 2024. These data demonstrated compelling impact on key disease biomarkers and trends in improvement of multiple functional endpoints. Register today and submit your questions in advance: https://lnkd.in/esueeqBU
Advancing DYNE-251: An Investigational Medicine for Duchenne to Deliver for Patients
parentprojectmd-org.zoom.us