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
Parent Project Muscular Dystrophy
Non-profit Organizations
Washington DC, New York 3,596 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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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
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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
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Registration is now open for PPMD’s 2025 Annual Conference, taking place June 19-21, 2025 at Caesars Palace in Las Vegas, Nevada! Families save 30% on registration rates now through July 7, 2024—register today! https://lnkd.in/eGudASuT
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Capricor Therapeutics, Inc. today announced additional positive 3-year safety and efficacy results from the company’s ongoing HOPE-2 open label extension (OLE) study of deramiocel (CAP-1002) for the treatment of #Duchenne. Learn more: https://lnkd.in/eHuC4eJ6
Capricor Therapeutics Announces Positive Skeletal Muscle and Cardiac Function Data from HOPE-2 OLE Study Data of Deramiocel (CAP-1002)
https://www.parentprojectmd.org
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Leading into PPMD’s 30th Annual Conference, PPMD is excited to host a professional meeting focusing on #Becker muscular dystrophy care. Over the course of two days, attendees from across subspecialties, academic medical centers, and industry partners will explore a number of key issues specific to the care of individuals with Becker. Coming out of this meeting—and our Annual Conference, which includes sessions highlighting Becker clinical care and research in progress—we look forward to driving consensus to inform the creation of a set of clinical care guidelines for the care and treatment of individuals living with Becker with a goal of finding and facilitating access to excellent care for all. We look forward to providing the community with additional updates following the meeting. #PPMD30 #PPMDEveryFuture Learn more: https://lnkd.in/e9E_Pxmx
PPMD Convenes Leading Experts to Discuss Topics in Becker Care Ahead of 30th Annual Conference
https://www.parentprojectmd.org
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Milestone Moments: PPMD’s Certified Duchenne Care Centers (2014) Every single person living with #Duchenne and #Becker deserves the best care possible. PPMD works with Duchenne experts and partner organizations to identify gaps in care, develop standardized care practices, connect families and individuals to the best specialists, and improve quality of life. In 2014, PPMD certified the first Certified Duchenne Care Center (CDCC). The CDCC program makes comprehensive care and services even more accessible for families, with 38 care centers currently certified across the country. Learn more about PPMD’s CDCC program and find your local Care Center: https://lnkd.in/eqMvRYxm ___________________________ 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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REGENXBIO Inc. has announced it initiated enrollment in a new cohort of patients ages 1-3 in its Phase I/II AFFINITY DUCHENNE® trial, and indicated that the company has confirmed an end-of-Phase II meeting is scheduled with the FDA at the end of July. REGENXBIO will be participating in PPMD’s 30th Annual Conference in Orlando, Florida during the “Research Row: Gene Therapy – Current and Evolving Landscape” session on Friday, June 28. If you haven't already registered to attend PPMD's 30th Annual Conference, register to attend virtually! https://lnkd.in/eV8Csijh
REGENXBIO Announces Expansion of AFFINITY DUCHENNE® Trial to Include New Cohort of Younger Patients
https://www.parentprojectmd.org
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This week marks our favorite time of the year, when PPMD brings together families, physicians, researchers, caregivers, industry partners and those living with #Duchenne and #Becker for three days of learning, connecting, and recharging. Alongside our robust agenda covering the latest updates in research, clinical trials, approved therapies, care initiatives, and quality of life topics, PPMD’s 30th Annual Conference will also offer community-building activities and events to support each and every member of our community. Whether you plan to join our record-breaking number of in-person attendees or participate virtually, we look forward to connecting with you! #PPMD30 #PPMDEveryFuture https://lnkd.in/exuJZnwq
PPMD's 30th Annual Conference | June 27-29, 2024 | Orlando, FL
web.cvent.com
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If you haven't already registered, join us as a virtual attendee next week during PPMD's 30th Annual Conference, June 27-29 and don’t miss this must-watch session: Navigating the Approved Therapy Landscape | Thursday, June 27 at 2:15 PM ET With multiple recent approvals, including yesterday's announcement regarding the expansion of the ELEVIDYS label, the therapy landscape for #Duchenne has transformed significantly. Join us to hear updates on the latest approved therapies and an expert-led discussion on decision-making, incorporating patient and caregiver voices, and the complexities of prescribing multiple approved therapies for an individual. Register now and be part of this important conversation! #PPMD30 https://lnkd.in/eQFN2zhT
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