Family Friday: Reflecting on Adjusting to a New Diagnosis

For many of us, self-quarantine is in full swing, and adjusting to a different family structure may be overwhelming. So your PPMD family is launching Family Fridays to discuss topics that impact the entire family and solutions that we hope will help you make the most out of your time together while maintaining your sanity – including some ways that our whole Duchenne family can find some fun ways to stay as active as possible while also making sure that the fight to end Duchenne remains strong.

Watch the Recording

Exploring, understanding, and making decisions about Duchenne research and clinical trials can be very overwhelming. During our June 12, 2020 Family Friday on Facebook Live, we were joined by Dr. Mena Scavina (Nemours Children’s) and Michael Lo Sapio (parent) to discuss navigating Duchenne research and clinical trials as well ways to advocate for your family.

RESOURCES MENTIONED

EXPLORE APPROVED & POTENTIAL THERAPIES

Duchenne research continues to progress, with multiple therapies in clinical trial. Stay up-to-date on the latest progress of drug development in Duchenne.
parentprojectmd.org/pipeline

CURRENT CLINICAL TRIALS

Learn about actively recruiting clinical trials and studies you or your child may qualify for.
parentprojectmd.org/exploretrials

CONSIDERING A CLINICAL TRIAL

If you are considering a clinical trial, we have resources available to help you decide whether or not clinical trial participation is right for you and your family.
parentprojectmd.org/considering-clinical-trial/

JOIN THE DUCHENNE REGISTRY

Once you join The Duchenne Registry and complete your Medical Surveys, the Registry will let you know when you might be a good fit for research studies and clinical trials. Your anonymous Registry data is also shared with researchers to speed the development of new therapies.
duchenneregistry.org

PPMD’s VIRTUAL CONFERENCE

Registration is now open for PPMD’s 2020 Annual Conference Virtual Edition! Though we can’t connect in person this year, there was no way PPMD could let the summer go without hosting our Annual Conference. So this year, we are gathering virtually! From Wednesday, July 22 Saturday, July 25, we will be offering the kind of robust, informative agenda you have come to expect from PPMD over the last 25 years. Take a look at what we have planned so far and register for FREE today!
parentprojectmd.org/conference

Additional questions can be sent to ellen@parentprojectmd.org

JOIN OUR NEXT FAMILY FRIDAY!

Join PPMD for our next Family Friday on Friday, June 19 at 12 PM ET on Facebook Live where we’ll discuss advocating for yourself in research!