In the 20+ years PPMD has been around, the average lifespan of people with Duchenne has increased. This incredible leap is not because of any drug interventions or treatments because as we all know, to date there are no approved therapies. Rather this is because of the push from PPMD to advance care over the last two decades.
PPMD strives to ensure that every single person with Duchenne receives optimal care. By making a sustaining gift of $30 per month (less than $1 a day!) to PPMD, you are investing in a network of leading care providers determined to help us reach this goal.
"Being the mother of a son with Duchenne requires love, sacrifice, and heartbreak. The shock of finding out I was a carrier was almost more than I could bear. PPMD has been there for me. Caring for yourself in light of this reality becomes as important as caring for your son."
—Mariana Livingston, Connor's mom
Whether working closely with the Centers for Disease Control on updating the landmark Duchenne Care Considerations or certifying the best Duchenne-care specific clinics around the country, PPMD continues to insist that people with Duchenne deserve the best care possible. We provide you with tools – such as the PJ Nicholoff Steroid Protocol, Emergency Care Card, comprehensive handouts, and the only Duchenne app for your mobile device – so that everything you need is at your fingertips when you need it.
We look for gaps in care and identify areas of concerns – cardiac, pulmonary, and bone health care – based on what is happening to the people in our community. We convene leaders so that we can understand Duchenne systemically. We understand that a large segment of our community are moms/sisters/aunts who are carriers of the Duchenne gene. That carries with it physical and psychological implications that need to be addressed.
We are looking ahead and trying to address challenges before they become epidemics. Your monthly support of PPMD helps us look under every rock, around every corner, and down every path for the latest in optimal care.