No one fights alone. This is what keeps our kids going. 

Jeg and Osama both have NPC and both rely on adrabetadex, one of the two medications in jeopardy, to stay alive. They've both been stable for years on adrabetadex. Jeg, on the left, is a champion junior drag racer. Osama, on the right, races on foot, pushing his old walker at warp speed down the sidewalk.

These boys are filled with courage and compassion. When other kids were at the first day of school, Jeg stood by Osama’s side in the hospital, after his own life saving treatment, and supported his friend Osama as he got his treatment injected into his lower back. Jeg and Osama, you are small in size, and giant in heart. We are fighting with you. 

Our petition is at 7,500 signatures!!! AMAZING! THANK YOU!!!!
Will you share this petition with five more friends for Jeg and Osama? If everyone who signed asks even one more friend to sign, we will be at 15,000 signatures!! THIS MATTERS. Our kids need their medicines to live. We need FDA to understand. Don’t take it away, don’t make them weaker instead of stronger. We must save these medicines for Jeg, Osama and all NPC patients. Thank you!!! #dontgiveuponnpc