Parent Project Muscular Dystrophy

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

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

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

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

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

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

While not every individual living with #Duchenne or #Becker will have problems with learning or behavior, it’s important to acknowledge that some behaviors experienced may be related to the diagnosis. Panel sessions during PPMD’s 30th Annual Conference in June discussed how emotional dysregulation, social immaturity, learning challenges, sleep, and stress can affect the behaviors of children living with Duchenne/Becker, impacting quality of life for not only the child but the entire family. Check out the recordings of these sessions, as well as helpful resources, here: https://lnkd.in/ex_rRFHa

Coach To Cure MD is expanding to include sports beyond just football! Families are encouraged to promote community involvement in the fight to #EndDuchenne, holding fundraising events, going to games to cheer on their favorite teams, and serving as ambassadors of Coach To Cure MD. Coaches, players, and fans nationwide for every sport can support the cause! Learn more and get involved with Coach to Cure MD’s 17th season: https://lnkd.in/ejd7RqXj

PTC Therapeutics, Inc. has shared that it has resubmitted its New Drug Application (NDA) to the FDA for review and potential approval of ataluren (Translarna). Following the resubmission, PPMD sent a request to the FDA in support of the review and hopeful positive outcome for ataluren. We are pleased the FDA has now received the NDA and look forward to FDA’s confirmation of their willingness for a full review and decision. Learn more and read PPMD’s letter to the FDA here: https://lnkd.in/e9iJCER5

Edgewise Therapeutics recently joined PPMD for a webinar to share more about Edgewise’s ongoing clinical trials, which aim to protect muscle in individuals living with #Becker. Learn more and watch the recording: https://lnkd.in/eiMwntXC