PPMD is committed to ending Duchenne.

For 30 years we’ve accelerated research, shaped policy, advanced care, and connected the community.

Since 1994, Parent Project Muscular Dystrophy (PPMD) has played a key role in achieving significant victories for everyone diagnosed with Duchenne and Becker. Together as a community, we’ve secured millions of dollars in funding for research and clinical trials, raised our voices to impact policy at both federal and state levels, led advances in care that have added ten years to the average lifespan, and played a pivotal role in the approval of multiple therapies.

These breakthroughs in research, advocacy, and care would not be possible without the community’s tireless work and dedication. While there have been many moments to celebrate, we are not yet at the finish line. There is an urgent need to further accelerate the development of new therapies and increase access so that everyone can get these treatments.

We are committed to Fighting for Every Future.

30 years of progress

  • PPMD Hosts 1st Annual Conference

    PPMD is born. Our first Annual Conference is held, connecting families with clinicians, researchers, and stakeholders to advance our mission to end Duchenne.

  • PPMD Invests in 1st Duchenne Research Center

    This investment breaks down barriers and encourages the research community to build ideas, test theories, and motivate each other.

30th year events

Engaging every part of the community is critical to advancing our mission to end Duchenne. Here are just some of the ways you can connect with the community and join PPMD at events in our 30th year.

More Ways to Connect

No one needs to go through the Duchenne journey alone. PPMD offers a variety of ways to connect with others, ensuring that you always have a supportive community by your side.

Find a Local PPMD's Connect Group

PPMD’s Connect is the official family outreach program of PPMD. Led by volunteer parents and grandparents, PPMD’s Connect groups serve as regional points of contact for families and individuals affected by Duchenne and Becker. Each group also has Facebook group to allow families to seek support and connection online.
Newly Diagnosed Families

PPMD hosts quarterly virtual meet & greets for Newly Diagnosed Families. These are casual get togethers where families who have received a Duchenne/Becker diagnosis within the last year or so can meet other new families and engage with members of PPMD’s Care and Leadership Teams. Participants can also opt to receive a free packet of resources especially for newly diagnosed families. Join our next meet & greet.
Teen and Adults — PPMD's Adult Advisory Committee (PAAC)

The PPMD Adult Advisory Committee (PAAC) amplifies the teen and adult voices of individuals living with Duchenne and Becker through advocacy, education, mentorship, and awareness. The PAAC hosts regular virtual socials for the teen and adult community and has recently launched a new app, PAAC Chats, to give people with Duchenne and Becker a place to connect and discuss topics that are important to daily life. Get involved with the PAAC.
Dads, Tweens, Grandparents and Extended Family Members — Virtual Socials

PPMD regularly hosts virtual meetings for Dads, Tweens, Grandparents and Extended Family Members. View our upcoming events and contact nicole@parentprojectmd.org to learn more.
Siblings — PPMD’s Sibs Connect

PPMD’s Sibs Connect group engages individuals that have siblings with Duchenne and Becker, and fosters connecting with other siblings, sharing concerns and ideas, and supporting siblings at every step of their journey. The group is run by siblings, for siblings and for now is geared toward those ages 16 and older. We will expand to younger siblings in the future!

 

Fighting for Every Future

PPMD is committed to fighting for every future, until the day 100% of those diagnosed have access to a treatment to end Duchenne. Here are just some of the ways you can get involved and join the fight with PPMD in 2024.

Fundraise

RACE TO END DUCHENNE

Join the Race to End Duchenne team by participating in an endurance event and raising much needed funds to support PPMD’s mission. Whether you’re running a local 5K or training for a major marathon, there are plenty of ways to get involved. Visit our website for our current race calendar or choose your own race and start raising funds and awareness.
Race to End Duchenne

CREATE YOUR OWN FUNDRAISER

Fund the fight to end Duchenne your way and have fun encouraging your community to support you! From fun runs, bake sales, and game nights, to full scale golf tournaments and live auctions, the PPMD team is here to help you every step of the way.
DIY Fundraising

COACH TO CURE MD

On the last Saturday of each September, the American Football Coaches Association (AFCA) and PPMD gear up to raise money and awareness through Coach To Cure MD. There are multiple ways you and your family can participate on game day — and have a great time doing it. Find out how you can get in the game and join the PPMD team!
Coach To Cure MD