News

Data shows Translarna delays loss of ambulation by more than five years in nonsense DMD boys.

The post STRIDE data shows Translarna delays loss of ambulation by more than five years in nonsense DMD boys appeared first on World Duchenne.

The Akari Organization supports low-income Hispanic families with people affected by Duchenne in San Antonio, Texas. 

The post The Akari Foundation joins World Duchenne Organization appeared first on World Duchenne.

The recording from the online event 'Adult Life & Duchenne' is now available for rewatching. Interpretation available in multiple languages.

The post ONLINE EVENT: ADULT LIFE & DUCHENNE appeared first on World Duchenne.

All World Duchenne Awareness Day 2021 events involving thousands of people across the world, under the theme ‘Adult Life & Duchenne’.

The post World Duchenne Awareness Day highlights a year-round effort to improve adult life in Duchenne appeared first on World Duchenne.

The Journal of Neuromuscular Diseases published the consensus guidelines for adult Duchenne care.

The post Consensus Guidelines for Adult Duchenne Care appeared first on World Duchenne.

During the second FAIR Data Meeting for Duchenne, 120 participants from 22 countries discussed how they could drive FAIR data efforts to facilitate research and healthcare.

The post How Patient Organizations Can Drive FAIR Data Efforts to Facilitate Research and Health Care appeared first on World Duchenne.

Adam Peska from the Czech Republic won a gold medal in individual boccia BC3 at the 2020 Summer Paralympics in Tokyo, Japan.

The post Adam Peska to win gold medal in Boccia at Tokyo Paralympics appeared first on World Duchenne.

Today, Philip Jönsson won the gold medal in the mixed 10m air rifle standing SH2 event at the 2020 Summer Paralympics held in Tokyo, Japan.

The post Philip Jönsson first person with Duchenne MD to win gold at Paralympics appeared first on World Duchenne.

The aim of this ENMC workshop were to raise priority and need for clinical and research focus on DMD female carriers. Report now available.

The post ENMC workshop to refine recommendations for female carriers appeared first on World Duchenne.

The World Duchenne Organization is organizing an online educational event on Adult Life & Duchenne.

The post Online event on Adult Life & Duchenne appeared first on World Duchenne.

1. Tomorrow is Coach To Cure MD 2021!
24 September 2021, 6:54 pm

We are just one day away from the 14th Annual Coach To Cure MD presented by Werner Ladder on Saturday, September 25th! This weekend, AFCA Coaches around the country will be wearing Coach To Cure...

The post Tomorrow is Coach To Cure MD 2021! appeared first on Parent Project Muscular Dystrophy.

PPMD is pleased to share that Capricor Therapeutics announced today positive final data from the HOPE-2 randomized, double-blind, placebo controlled clinical trial using CAP-1002 to treat patients with Duchenne. The HOPE-2 clinical trial met its...

The post Capricor Therapeutics Announces Positive Final Data From its Phase II HOPE-2 Trial in Patients with Duchenne Muscular Dystrophy Treated with CAP-1002 appeared first on Parent Project Muscular Dystrophy.

Throughout the years, I have learned a great deal from working with boys and young men with Duchenne and Becker. I have also come to know their families well and a common concern for families...

The post PPMD Continues to Support Carrier-Focused Research with Latest Award appeared first on Parent Project Muscular Dystrophy.

With all of the attention on COVID-19, we don’t want to lose track of the need to protect against the flu.  The flu isn’t going away, and as  flu season approaches, we want to help...

The post 2021/2022 Flu Season: Stay Safe, Informed, and Healthy appeared first on Parent Project Muscular Dystrophy.

This Duchenne Action Month, PPMD is recognizing the strength of our community as we work to ensure that people with Duchenne thrive in adulthood. Thanks to your continued investments, our loved ones are living longer,...

The post Thanks to your continued investments PPMD continues forward in all areas of support appeared first on Parent Project Muscular Dystrophy.

We were excited to learn of the news of the FDA’s full approval of Pfizer-BioNTech’s Covid-19 vaccine, now marketed under the name Comarnaty, on Monday August 23, 2021. This is the first fully approved Covid-19...

The post FDA’s Full Approval of Pfizer-BioNTech’s COVID-19 Vaccine Comarnaty: What Does It Mean? appeared first on Parent Project Muscular Dystrophy.

Parent Project Muscular Dystrophy is excited to announce a $350,480 programmatic investment in Myosana Therapeutics, Inc. (Myosana) to support the company’s early-stage development of a non-viral gene therapy delivery platform aiming to slow skeletal muscle...

The post Parent Project Muscular Dystrophy Invests $350,480 in Myosana Therapeutics to Support Non-Viral Gene Therapy Development appeared first on Parent Project Muscular Dystrophy.

PPMD’s Physical Therapy Resources Physical Therapy (PT) is an important area of care for every person living with Duchenne at every age. Whether you or your child practices PT with a community therapist, school-based therapist,...

The post PPMD’s Physical Therapy Resources appeared first on Parent Project Muscular Dystrophy.

9. COVID-19 Vaccination Update
20 August 2021, 1:48 pm

PPMD is closely following any changes or updates to current Covid-19 vaccine recommendations, including new recommendations for immunocompromised individuals. Under guidance of the Centers for Disease Control and Prevention (CDC) to understand how current guidelines...

The post COVID-19 Vaccination Update appeared first on Parent Project Muscular Dystrophy.

Race to End Duchenne is offering THREE magical opportunities to join us this race season at Walt Disney World®! Disney’s Wine & Dine Half Marathon Weekend powered by AfterShokz (November 4-7, 2021) – This wickedly...

The post Race to End Duchenne in the most magical place on Earth! appeared first on Parent Project Muscular Dystrophy.