It’s important to ensure that even within the context of #Duchenne / #Becker , kids are doing things that kids should be doing, adults are doing things that adults should be doing, and families can lead the lives they want to lead. Together with PPMD, your community, and your care team, it’s all about figuring out how we can make that happen. Panel sessions during PPMD’s 30th Annual Conference last month dove into topics such as social experiences, relationships, activities and hobbies, and even home modifications as ways to enhance quality of life for those living with Duchenne/Becker and their families. Check out the recordings of these sessions, as well as helpful resources, here: https://lnkd.in/eKsiaab4
Parent Project Muscular Dystrophy
Non-profit Organizations
Washington DC, New York 3,612 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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Season 6 of PPMD’s Living Duchenne podcast continues with Episode 2, “It’s a Marathon, Not a Sprint.” In this episode, host Rachel Poysky is joined by her husband, Dr. James Poysky, a Pediatric Neuropsychologist, for a conversation about insights into the connections between the #Duchenne brain and challenging behaviors. This wide-ranging discussion between two Duchenne parents dives into managing expectations, bringing more transparency to the neurological nuances of Duchenne, and finding the right resources and practices that work for your family. Take a listen to Season 6 Episode 2: It’s a Marathon, Not a Sprint, now available on Apple Podcasts, Spotify, or wherever you get your podcasts! https://lnkd.in/eFR87W3w
Season 6: Normalizing Behaviors
https://www.parentprojectmd.org
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PPMD is pleased to learn that DUVYZAT™ (givinostat) is now commercially available in the United States for individuals diagnosed with #Duchenne from six years of age and older. ITF Therapeutics LLC also announced the launch of its patient services program, ITF ARC, where families can find services to help navigate insurance challenges, personalized pharmacist support, financial and access assistance for eligible patients, educational materials, and other resources. PPMD is thrilled to see another approved therapeutic option for Duchenne become available to patients in the U.S. We remain committed to working towards community access to all approved products and will continue to work with all relevant stakeholders to ensure a favorable access environment for our community. Learn more: https://lnkd.in/dNMGGzvu
ITF Therapeutics Announces U.S. Commercial Availability of DUVYZAT™ (givinostat) for Treatment of Duchenne
https://www.parentprojectmd.org
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The approved therapy landscape has changed drastically in #Duchenne, especially over the last year. With multiple newly approved therapies comes a lot of questions about how to navigate these drugs. We explored these questions during two information-packed sessions at PPMD’s 30th Annual Conference last month. Check out the recordings of these sessions, as well as helpful access and coverage resources, here: https://lnkd.in/eiai5XZ2
Navigating the Approved Therapy Landscape
https://www.parentprojectmd.org
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PPMD if here for you. 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 Navigating Resources and Benefits appointments offer guidance to those who are looking for support resources and/or want to discuss navigating benefits or access programs. 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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All clinical trials are set up differently in the criteria to be included and in the procedures that are part of the study. Because all clinical trials have risks and benefits, it is important to discuss any trial you might be considering with your or your child’s medical team. Families often contact PPMD to better understand the different gene therapies and the various clinical trials – our Certified Genetic Counselors are happy to talk through the various options with you in more detail. Schedule a one-on-one meeting with the PPMD For You team: https://lnkd.in/eyST7M3B PPMD’s Gene Therapy Hub aims to support and inform families like yours, providing insights and guidance to help you better understand the dynamic landscape of gene therapy. Check out the Gene Therapy Hub to learn more: https://lnkd.in/eMBc3Uys
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PPMD welcomes the recent announcement by the FDA of the “Rare Disease Innovation Hub.” This initiative marks a pivotal moment in the journey towards better support and treatment for rare disease patients, including those living with #Duchenne and #Becker. Learn more: https://lnkd.in/erdF4gPt
PPMD Applauds FDA Launch of Rare Disease Innovation Hub — A Milestone for Rare Disease Patients
https://www.parentprojectmd.org
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Milestone Moments: PPMD’s Adult Advisory Committee Established (2015) In 2015, the PPMD Adult Advisory Committee (PAAC) was established to amplify the teen and adult voices of #Duchenne, #Becker, and carriers as an extension of PPMD. The PAAC takes a holistic approach to advocacy by addressing care, community, and quality of life. The group works together to elevate the lives of individuals living with Duchenne and Becker through mentorship, outreach, and education. Members of the PAAC are actively engaged in state and federal advocacy efforts; planning and implementing Teen and Adult sessions at PPMD’s Annual Conference each year; discussing concerns, interests, and strategic initiatives impacting the Duchenne and Becker community; and providing open and inclusive opportunities for teens and adults to connect with one another. Learn more about PPMD’s Adult Advisory Committee: https://lnkd.in/eurhZW7E ___________________________ As we reflect on the progress we’ve made as a community since PPMD’s founding in 1994, we’re sharing milestone moments in the fight for every future from the last three decades. #PPMDEveryFuture Learn how you can join PPMD in the Fight for Every Future: https://lnkd.in/ee5AwHH2
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The #Duchenne and #Becker journeys are complex, but PPMD is here for you. Whether you have follow-up questions coming out of our 30th Annual Conference, have just received a diagnosis, or are looking for information about genetics and clinical trials, navigating school and IEPs, or planning for independent living, we’re here to provide you with resources to help you navigate the concerns and decisions that are part of Duchenne and Becker. 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. 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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A diagnosis of #Duchenne or #Becker comes with an overwhelming amount of information, all of which is important to know. At times, particularly during emergencies, it can be difficult to find and communicate all the necessary information to properly care for your child with Duchenne/Becker. Our DIY Care Binder materials serve as a place to keep important information regarding Duchenne/Becker care to help you navigate routine care and emergencies, as well as areas you can personalize with your own care information. Order a pre-filled DIY Care Binder or download fillable binder materials on our website: https://lnkd.in/e2yh-8ZS
Order Support Materials
https://www.parentprojectmd.org