Washington, D.C.
Joined June 2009
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Parent Project Muscular Dystrophy (PPMD) retweeted
BREAKING NEWS: @MDAorg and @ParentProjectMD have published Consensus Guidelines for safe, equitable delivery of #GeneTherapy in #Duchenne #MuscularDystrophy
Read more ⬇️
mda.org/press-releases/mda-a…
Parent Project Muscular Dystrophy (PPMD) retweeted
📣 Calling all rare disease community members. Join a petition to Congress in honor of #RareDC2025
🗣️ On behalf of our nation’s rare disease community, this petition urges Congress to continue their support of steady and robust federal agency leadership, federal biomedical research funding, and public health agency resources.
✍📨 The Community’s letter will be sent to All Members of Congress on Rare Disease Day, Friday, February 28, so please take action and help spread the word: everylifefoundation.quorum.u…
Parent Project Muscular Dystrophy (PPMD) retweeted
We need your help. Contact your Senators today and ask them to support the Creating Hope Reauthorization Act to prevent this essential program from lapsing and ensure continued progress for #Duchenne and other rare disease communities. engage.parentprojectmd.org/a…
Parent Project Muscular Dystrophy (PPMD) retweeted
Parent Project Muscular Dystrophy (PPMD) retweeted
Join PPMD and @Solid_Bio on 11/12 at 1 PM ET for an update on the INSPIRE DUCHENNE clinical trial for SGT-003, a next-gen microdystrophin gene therapy for individuals living with #Duchenne. Register today and submit questions in advance: parentprojectmd.org/events/w…
Parent Project Muscular Dystrophy (PPMD) retweeted
Treatments enabled by the Priority Review Voucher Program #PRV empower #raredisease patients to make their voices heard. This election year, it’s important to remind your Senators to support #rarekids!
Take Action: everylifefoundation.org/prv/
#Cures4RareKids #EveryLifeFoundation #Rettsyndrome
Parent Project Muscular Dystrophy (PPMD) retweeted
“It’s a great cause for the Jensen family and any time that we can help out, we’re obviously going to be there.”
August’s Swing Fore the Future: A Fight to End Duchenne event was a great day on the golf course featuring current and former Caps all in support of @ParentProjectMD
Parent Project Muscular Dystrophy (PPMD) retweeted
A message from the Global Adult DMD Group:
In celebration of #WDAD2024, we invite everyone affected by Duchenne and Becker muscular dystrophy, including carriers, to take part in a special video initiative.
Click here to participate: docs.google.com/forms/d/e/1F…
Parent Project Muscular Dystrophy (PPMD) retweeted
Today is #WorldDuchenneAwarenessDay
Duchenne muscular dystrophy is a rare genetic disorder causing progressive muscle degeneration & weakness
We salute the courage and resilience of the children living with it
Thank you @KuwaitMissionUN for this initiative 🎈❤️
#WDAD2024
Parent Project Muscular Dystrophy (PPMD) retweeted
Today is #WorldDuchenneAwarenessDay! We are honored to join the global call to action for those living with Duchenne Muscular Dystrophy. Let’s work together to create a future without #DMD🎈
World Duchenne Awareness Day aligns with the Sustainable Development Goals, promoting #HealthForAll (SDG3), reducing #Inequality (SDG10), advancing inclusive education (SDG4), and supporting sustainable partnerships (SDG17). Let's work together to leave no one behind! 🌍💪 #Agenda2030
Parent Project Muscular Dystrophy (PPMD) retweeted
Duchenne Muscular Dystrophy (DMD) is a rare, progressive disease caused by a genetic mutation, which can affect children as young as 2.
It leads to muscle weakness, loss of motor skills, and eventually impacts the heart and lungs.
On this first #WorldDuchenneAwarenessDay, we unite to amplify the voices of those living with DMD, advocating for their rights, inclusion, and well-being. Together, we can build a more inclusive world where all are empowered to thrive. un.org/en/observances/duchen…
Parent Project Muscular Dystrophy (PPMD) retweeted
🎈This Saturday, September 7th, is World Duchenne Awareness Day! A day to raise awareness for Duchenne muscular dystrophy across the globe.
Join us as we shine a light on Duchenne!
#WDAD2024 #SupportDuchenne #DMD #DuchenneAwareness #TogetherWeFight
Parent Project Muscular Dystrophy (PPMD) retweeted
Duchenne muscular dystrophy is a genetic disorder causing progressive muscle degeneration & weakness.
#WorldDuchenneAwarenessDay is an opportunity to advocate for the rights & well-being of those living with it ❤️. Thanks @KuwaitMissionUN!
🔗 un.org/observances/duchenne-…
Parent Project Muscular Dystrophy (PPMD) retweeted
Today is #WorldDuchenneAwarenessDay.
Duchenne Muscular Dystrophy (DMD) is a severe genetic disorder characterised by muscle weakening and degeneration. It affects 1 in 3,500 live male births globally and 1 in 100,000 in sub-Saharan Africa.
Every child affected by DMD deserves accessible and affordable healthcare. Let's speak up for equal care and inclusion.
Parent Project Muscular Dystrophy (PPMD) retweeted
On World Duchenne Awareness Day, #Malta joins our colleagues around the world in raising our voices, & awareness for those affected by Duchenne Muscular Dystrophy, & amplifying the voices of advocates for the rights, inclusion & well-being of people living w/this disease. #WDAD
Parent Project Muscular Dystrophy (PPMD) retweeted
🌍 Duchenne knows no borders. This #WorldDuchenneAwarenessDay, let’s unite as a global community to support research, care, and advocacy for those affected by DMD. #WDAD2024 #Kuwait4Duchenne
Parent Project Muscular Dystrophy (PPMD) retweeted
🎥 OUT NOW – Raise your voice for Duchenne: the documentary.
This inspiring documentary portrays the powerful stories of three individuals from different corners of the world, living with Duchenne muscular dystrophy (DMD).
Please share 🙌 #wdad2024
youtube.com/watch?v=Vdv6vqtq…
Parent Project Muscular Dystrophy (PPMD) retweeted
Duchenne muscular dystrophy is a genetic disorder causing progressive muscle degeneration & weakness.
This Saturday marks the first #WorldDuchenneAwarenessDay - a moment to foster understanding and empathy towards those affected by rare diseases.
un.org/observances/duchenne-…
Parent Project Muscular Dystrophy (PPMD) retweeted
Join PPMD and @EdgewiseTx for a webinar on August 7th, 2024, at 1 PM ET to learn more about Edgewise’s ongoing clinical trials, which aim to protect muscle in individuals living with #Becker. Learn more, register, and submit questions in advance: parentprojectmd-org.zoom.us/…
Parent Project Muscular Dystrophy (PPMD) retweeted
Join PPMD, @MDAorg, @EveryLifeOrg, and @LHF_EndDuchenne for a collaborative webinar on Friday, May 3rd at 1pm ET updating the community on the latest developments in #newbornscreening for #Duchenne. Register now and submit questions in advance: parentprojectmd.org/events/w…
