Moments ago, history happened! Eteplirsen, the personalized genetic treatment we’ve been advocating the FDA to approve for the last several years, will now be made available to all patients who can benefit from this groundbreaking therapy. Read the full press release from the FDA here.
A lot of blood, sweat and tears got us to this place. Twelve boys gave up a huge slice of their childhood to participate in this clinical trial. They are our true heroes.
We want to thank you–our committed and unstoppable supporters–for every donation, hug, word of encouragement, social media share, sponsorship, volunteer hour, petition signing, call to legislators–the list goes on and on. No one person could have achieved this victory alone. We are a powerful force to be reckoned with. This victory is symbolic of what can happen when many people band together and say, “ENOUGH! You will NOT take my son’s life without a fight.”
The biggest thank you goes to my son, Jackson. When we received word of his diagnosis 4 years ago, I thought happiness was a bygone. A reality no longer reserved for families like us. Along the way, I’ve learned to follow his lead, and he never disappoints. Even though his body continues to fail him faster each day, his smile continues to light up the darkness. Jackson–I could not love you more, my brave, strong warrior.
Today we celebrate. Tomorrow, we get back to work….
All my gratitude,