First, you are not alone. Though Duchenne is categorized as “rare” there is a huge active global community at your fingertips fighting day and night to end Duchenne. We want you to know everything that is available, but we suggest you enter into it at your own pace and comfort level.
Find a family in your state
Online interactions are great, but nothing can replace in-person connections with other families living with Duchenne. PPMD has local Connect groups all over the country for this very reason.
Previously known as FACES, these groups serve many functions, but primarily exist to help you along this journey. Reaching out to your local group will let them know that you are there. Maybe you don’t want anything, or maybe you just want to “listen” for awhile — 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.Find a Local PPMD Connect Group
Join an online community
PPMD Community Forum
PPMD’s Community Forum allows families all over the world to connect with each other to chat, organize, and share stories, news, and information.Join the Community Forum
PPMD on Facebook
The Parent Project Muscular Dystrophy Facebook page is great place to get daily Duchenne update on research and care and community. Facebook also has a large number of active groups in the Duchenne community. A simple search under “Duchenne” and you will find a large list of them. You will need to be advised that most of these groups are independently monitored and depending on your level of comfort you might want to avoid over saturation.Connect with PPMD on Facebook
Apply for PPMD’s Annual Conference Newly Diagnosed Program
Parent Project Muscular Dystrophy’s Annual Conference is a unique convergence of industry partners, scientific leaders, medical providers, people living with Duchenne, and their families. 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 to connect with each other. To build support networks. To realize no one is on their own in the fight to end Duchenne.
Each year, PPMD allows up to 30 newly diagnosed families to come to Conference for free. 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.Learn about PPMD’s Annual Conference Apply for PPMD’s Newly Diagnosed Scholarship
Attend an End Duchenne Tour Stop
In addition to the Annual Conference, Parent Project Muscular Dystrophy heads a community engagement initiative called the End Duchenne Tour. 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, the End Duchenne Tour 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.See our current list of End Duchenne tour stops
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.Join the Race to End Duchenne
“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
PPMD has partnered with the American Football Coaches Association (AFCA), a professional organization for over 10,000 college football coaches and staff, to produce the largest national charity devoted exclusively to Duchenne. The goals of Coach To Cure MD are to raise awareness and money for Duchenne and finding a cure.
On one football Saturday of each season, AFCA coaches nationwide wear armbands during a game, and mention Coach To Cure MD during on and off-field interviews. We encourage families to attend games in their area, as well as host tailgating parties. Sign up to represent PPMD and help us tackle Duchenne.Tackle Duchenne with Coach To Cure MD