Get Support

First, you are not alone. Though Duchenne & Becker are categorized as “rare” there is a huge active global community at your fingertips fighting day and night to end this disease.. We want you to know everything that is available, but we suggest you enter into it at your own pace and comfort level.

Connect with PPMD’s team

When receiving a diagnosis, it comes with many questions and sometimes it’s hard to know where to even begin. The PPMD Team is made up of experienced staff members with expertise in navigating neuromuscular care and services, including understanding genetic testing results, knowing what questions to ask your care team, how to look for clinical trials, understanding insurance, and more. Schedule time to meet with our team here for individualized support as you navigate this diagnosis. 

Register with PPMD

Register with PPMD to connect with our team, access educational materials, stay up to date with the latest in research, care, community events and more. 

Newly Diagnosed Registration

Find a family in your state

Online interactions are great, but nothing can replace in-person connections with other families living with Duchenne & Becker. PPMD has local Connect groups all over the country for this very reason.

PPMD Connect groups serve many functions, but primarily exist to help you along this journey. They act as a local resource and support, and an opportunity to connect with other families in your region. Maybe you aren’t ready to connect yet or maybe you just want to “listen” for a while — that’s ok.

No one needs to go through this experience alone. Finding one or two families to connect with will help you to know that there is hope and that you have support whenever you need it.

Join an online community

PPMD on Facebook

The Parent Project Muscular Dystrophy Facebook page is a great place to get daily updates on research and care and community. Follow PPMD on social media to learn about opportunities for educational webinars, events and more.  

Virtual Connections

While nothing beats in-person connection, there are ways to connect with the community across the world virtually. PPMD provides support for every type of family member through a variety of avenues including:

• Monthly Dad’s Meeting
• Grandparents Group
• Siblings Connect
• Carrier Monthly Meetings
• PPMD Lighthouse Workshops 

PPMD’s Annual Conference Newly Diagnosed Program

Parent Project Muscular Dystrophy’s Annual Conference is a unique convergence of people living with Dystrophinopathy (Duchenne, Becker, Carriers), their families, scientific leaders, medical providers and industry partners. This exceptional meeting has grown to be recognized worldwide as the foremost Duchenne muscular dystrophy meeting. But more than that, it is a way for families affected by Duchenne & Becker to connect with each other. To build support networks. To realize no one is on their own in this journey.

Each year, PPMD provides dedicated support to families who have received a diagnosis of Duchenne or Becker in the past 3-4 years. Our Newly Diagnosed Program includes waived registration for 2 adults for eligible families, dedicated support meeting for families to connect with one another, family mentors, and opportunities for travel assistance.  For some families the diagnosis is still too raw for them to attend a meeting such as this, but for a large majority of families they are glad they decided to attend. The community will be there for you, to you hold you up when you need it. Visit our conference application page to apply today.

Attend a PPMD Together Event

In addition to the Annual Conference, Parent Project Muscular Dystrophy heads a community engagement initiative called PPMD Together. Our goal is to reach all regions of the country by bringing this program to new cities each calendar year.

Combining each of the pillars that make up PPMD’s mission, PPMD Together brings updates on research, advocacy, and care with each event. This is also an opportunity to connect with local families and, when possible, explore your area’s Certified Duchenne Care Centers.

Get Involved

PPMD offers many opportunities to become involved in the Duchenne community. We understand not all families choose to become involved in our efforts, but many find them empowering and a way to cope. Getting involved is also a great way to meet families in your area.

Race to End Duchenne

Race to End Duchenne has become our largest community fundraising program. PPMD leads teams in races all over the country. Whether you are novice or experienced runner, we have a race for you to participate in.

“Do It Yourself” Events

If you would prefer to host an event in your community, we have many opportunities to assist you. Visit our DIY Fundraising to End Duchenne webpage to browse fundraising and event opportunities. Some of these include:

• DIY Race Series: host a 5k, Fun Run, etc.
• Special Occasions
• Create Your Own Event: have an idea? PPMD will guide you and give you all the tools!

Attend a Coach To Cure MD Game

Coach To Cure MD is the perfect grassroots fundraising opportunity to combine your love of sports with raising awareness for Duchenne and Becker muscular dystrophy.

Started in 2008 as a college football partnership to raise awareness and funds for Parent Project Muscular Dystrophy, Coach To Cure MD is expanding to include sports beyond football. Families are encouraged to promote community involvement in the fight to end Duchenne, 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! Promote your involvement by getting your local high school’s athletic department to host a Coach To Cure MD game, rally your community for a tailgate or watch party and see the magic happen!