PPMD: 30 Years of Progress

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

1994

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.
1995

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.
1998

Steroids Become Gold Standard

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.

PPMD’s 30th Annual Conference

June 27-30, 2024 –
Orlando, FL

PPMD’s Annual Conference is the largest global gathering of Duchenne families. As we mark our 30th year, this milestone event promises an unparalleled experience with comprehensive discussions on research, clinical trials, approved therapies, care initiatives, and more. In celebration, we’re offering a limited-time, special promotional ticket price of $30 for each family member attending. Don’t miss this chance to be part of this unforgettable Conference — register today!

NEW! PPMD Together

April 19-20, 2024 – Cincinnati, OH
September 20-21, 2024 – Seattle, WA
November 2024 – Virtual

This year we are excited to introduce PPMD Together, a meeting series designed to emphasize connection, address quality of life issues, and provide insights into Duchenne care. These gatherings will offer us an opportunity to reflect on the progress achieved over the past three decades and the work we will continue — together — as we fight for every future. The meetings will also provide an opportunity for families to interact and learn from one another and other members of the community including industry partners, care providers, and advocates.

2024 will feature two in-person gatherings in Cincinnati, OH (April 19-20) and Seattle, WA (September 20-21). Can’t make it to either meeting? Save the date for PPMD Together: Virtual Edition in November!

PPMD's 2024 Advocacy Conference

March 3-5, 2024 –
Washington, DC

Each year, PPMD ensures that the Duchenne community remains a top priority in the minds and hearts of Congressional leaders and champions in Washington, DC. As we celebrate three decades of PPMD and the remarkable progress we’ve achieved together as a community, it is more important than ever to unite as advocates and share our stories with legislators to amplify our collective voice in support of our community’s policy priorities. We are also excited to host a PPMD Town Hall, where we’ll reflect on what we’ve achieved together and hear from you about your policy priorities moving forward.

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.

Join The Duchenne Registry

If you have Duchenne or Becker muscular dystrophy or if you are a carrier of Duchenne or Becker, join The Duchenne Registry. By sharing your data through our user-friendly smartphone app, you become a citizen scientist, advancing research and treatments for Duchenne. Participating in the Registry also helps you learn about and enroll in actively recruiting clinical trials and research studies.

Become an Advocate

Join the PPMD Advocate network and learn how to get involved with Duchenne advocacy. By signing up to be a PPMD Advocate, you will receive emails throughout the year about how you can take action through online action alerts right from home, as well as hear about opportunities to advocate in person with your elected officials.

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

Support PPMD’s commitment to fighting for every future with a monthly gift of $30

Monthly Giving is an easy way to join the fight to end Duchenne. Your monthly gift to PPMD will help us
accelerate research, impact policy, further develop optimal care for every single family, and provide better access to approved therapies.

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