Please join our family in an exciting fundraiser for muscular dystrophy research and awareness! In honor of Yehuda’s 12th birthday on January 7th, we are kicking off PPMD’s first ever read-a-thon. This is a very meaningful initiative to our family. 6 years ago Yehuda was diagnosed with muscular dystrophy. Immediately we were connected to PPMD and were given the support and guidance needed to get through a very difficult diagnosis. Its amazing to see the progress that has been made in these 6 years and it's a very promising time we are in right now of medical advances.
Yehuda’s diagnosis affects his entire body, and while we are pleased he is physically mostly stable and thank God, walking and independent, we are already starting to see some decline in his cardiac function (the heart is a muscle too). He recently started heart medications to hopefully delay the decline and improve his heart function, but we are hopeful one of the current medical research projects or trials will bring about even better options for cardiac treatment in Duchenne/Becker.
Anyone who knows Yehuda knows that books are very close to his heart. It is rare to find Yehuda home without a book nearby. Even as a 6 month old infant, he always loved being read to and even looking at books on his own. It came as no surprise that once he reached the age of reading, he took off like a reading rockstar. The summer before 3rd grade he read all the Harry Potter books in just one month! And he hasn’t stopped reading since then! We therefore chose to do a fundraiser that represents Yehuda and his love of all things literacy. As a family we are all avid readers, and we couldn’t think of a better way to combine this literary love and an organization that is near and dear to our hearts.
Six years ago, PPMD was there for us in our greatest time of need, directing us to the best Doctors, information and guidance. It’s been incredible to be able to witness the growth of this organization over the course of these past 6 years. To their credit, there are the first ever FDA approved medical treatments for Duchenne/Becker, with more on the horizon. We are fortunate that Yehuda receives care from a PPMD certified care clinic at Lurie Children’s Hospital of Chicago. There are very few organizations like PPMD, where the CEO, medical professionals and other experts are so easily accessible to all families, and there is always someone there to help you navigate the world of Duchenne/Becker, even on “off” hours. We are grateful for all PPMD has done for our family and we are confident that the day will come when Yehuda and other boys and men with Duchenne/Becker will be able to access more medical treatments to help them live healthy, long and full lives.
About the Read-A-Thon
We hope you will join us by creating your own page, as part of our read-a-thon team, or by donating toward our goal. The read-a-thon will culminate with the Jewish holiday of Purim, on March 10th, which is very fun and exciting holiday of merriment, charity, and dressing up (amongst other mitzvahs of the day). What better ending to what should be a very successful and far reaching campaign! Thank you ahead of time for participating, and stay tuned for some exciting updates from Yehuda and family! This should be a fun couple of months!