Duchenne Action Month – Week Four: Community
September 21-27
No one knows the experience of a life with Duchenne in it like families also living with a diagnosis. PPMD offers multiple ways to connect with the community, while raising awareness in the process.
Race to End Duchenne – From Anywhere!
Even though we’re apart, our community has never felt more together! Run (or walk, or roll) as one, by participating in PPMD’s first ever Race to End Duchenne Virtual Series. Choose from a 5K, 10K, or 15K distance and run anytime between October 17 and November 1. Prior to October 17 we’ll provide an app to track your course and let you listen to messages of encouragement from members of our community! Just like an in-person race, every participant will receive an official Race to End Duchenne Virtual Series t-shirt and finisher medal. Duchenne doesn’t stop for a virus – and neither will we. Join us as we Race to End Duchenne this fall, wherever you are!
New! PPMD’s Sibs Connect!
PPMD is launching our first-ever official group for siblings! If you have a sibling with Duchenne or Becker and are looking for a group to support you every step of this journey, this is for you. PPMD’s Sibs Connect will have virtual get togethers, including game nights, movie nights and much more. Currently the group is targeted to siblings 16 and older, with plans to expand to younger siblings in the future. Fill out the interest survey on our website to join the group!
Find a Local PPMD Connect Group
No one should have to navigate a Duchenne journey alone, and PPMD has local Connect groups all over the country for this very reason. These regional groups, run by volunteer Duchenne parents and grandparents, serve many functions, but primarily exist to be a source of comfort, support, and information for families in our community. Reach out to your local group and get connected. If a group doesn’t exist we can connect you with families in your area. Finding other families to connect with will help you to know that there is hope and that you have support whenever you need it.
Are You Ready for Kickoff? Coach To Cure MD Returns!
We are excited to let you know that despite limited conference play for football teams this fall, Coach To Cure MD is still happening! While it will be a bit different this year and we are still awaiting some dates and information from our partners at the AFCA, we are on the boards! This year we will kick off Coach To Cure MD on Saturday, September 26 and wrap up later in the fall. So, save the date for kickoff this Saturday, and stay tuned for some really cool and exciting NEW information to come as we celebrate the rest of the season! In the meantime, if you want to get started updating a current Coach To Cure MD Fundraising Page, or even start a new one, visit our website to get started!
Meet the PPMD Adult Advisory Committee (PAAC)
The PPMD Adult Advisory Committee (PAAC) serves to ensure that the voices of adults living with Duchenne or Becker are reflected in PPMD’s legislative, policy, care, and program activities. The 2020 PAAC includes 23 men with Duchenne and Becker and 1 female carrier of Duchenne who serve in a formal advisory capacity. The PAAC has also launched a Facebook group that gives people with Duchenne and Becker (and their loved ones) a safe place to discuss topics that are important to daily life.
Contribute to PPMD’s Community Resource Center
The PPMD Community Resource Center is a one-stop online resource for every family living with Duchenne and Becker. Here you can find some great local and national resources, products, and organizations recommended by other Duchenne and Becker families. If you have recommendations of resources to be added, please reach out to us
Find a Certified Duchenne Care Center
PPMD is dedicated to ensuring that all families have access to comprehensive, optimal Duchenne care. PPMD started the Certified Duchenne Care Center Program to create a network of sites capable of providing the highest level of comprehensive Duchenne care based on published Duchenne CDC care guidelines. Find the site nearest you and learn more about our certification requirements and process.
Join Us on the End Duchenne [Remote] Tour
After our “summer break” we’re excited to confirm our upcoming virtual End Duchenne Tour stops! Even though we can’t be together in person, we are eager to connect with families and care providers regionally to hear about the latest care and research updates. We’ll be heading to St. Louis on October 17 in partnership with University of Missouri and Children’s Mercy and we’ll wrap up the year on December 5 in Miami featuring the opportunity for bilingual participation for Spanish speaking families.
Check Out the PPMD Webinar & Video Library
PPMD offers an educational webinar series dedicated to breaking down difficult and potentially confusing aspects of Duchenne to make sure everyone in our community fully understands the complexity of the disease. Visit our Webinar & Video Library to learn more about the different mechanisms of research and trials being conducted, the importance of patient involvement in advocacy, and other initiatives.
