Patients Can’t Wait
Today, patient advocates from across the country will unite in a day of action to urge the Senate to make medical innovation a top priority.
Living With Lysosomal Disease
In a break with the past, Einstein’s 2015 celebration of Rare Disease Day focused not on the idea of rare disease generally but instead highlighted the lives of individuals living with a distinct group of 60 syndromes known as lysosomal storage disorders (LSDs). This focus was chosen as a way of celebrating […]
The Quest To Find The Patients For Sanfilippo Syndrome Type D or MPS III D
For major diseases like diabetes, hypertension and cancer there are literally millions of patients, you probably know one or more person with one of these diseases, you may even have one of them. But when it comes to a rare disease […]
Taking to the airwaves
If you missed it, Jonny went on Live with Kelly & Michael, AND CBS News with Kristine Johnson to talk about his run and Sanfilippo Syndrome. There is just no stopping him. Not only can this man […]
This holiday season, eBay and PayPal are helping nonprofits raise funds and awareness.
#GivingTuesday, December 2, 2014, is a global day dedicated to giving back. eBay and Paypal will be launching campaigns to help PayPal Giving Fund nonprofits make the most of this generous day and season. We are encouraging you to join the […]