Thank you for your advocacy, let's take this to the next level!

Dear Allies, 
 
Wow! Our initial goal for our Change.org petition was 10k signatures.  In a matter of two months, we nearly doubled that goal!   We are so grateful to you - The petition which you signed will soon be in the hands of FDA officials! Your response has invigorated our resolve and increased our capacity to make ourselves heard by the FDA.   
 
A groundbreaking drug called elamipretide has been proven to better the lives of those living with Barth syndrome, however it’s not yet available to all patients as it awaits FDA review. The FDA has been slow to accept the clinical trial data, stating that the number of trial participants is too low for consideration – but for rare diseases, this is the reality. Barth syndrome only affects a very small population, which is why we need your help to tell the FDA that despite the rarity of the disease, the drug deserves consideration.  
 
Because of this, we ask for your continued support as we push forward with a new strategy to ensure our voices continue to be heard by the FDA! 
 
Join us in encouraging the FDA to accept and review promising data from this life-transforming medicine by writing a letter directly to the FDA explaining why we need a fair and equitable review of elamipretide. https://nottooraretocare.org/  
We have long awaited a treatment for Barth syndrome that could better the lives of patients and ease the burden on families, and that day is hopefully close but only if we continue to work hard together!  Barth syndrome may be an ultra-rare condition, but hope should not be rare.  Please take the next step to tell the FDA that you are with us in saying Barth syndrome is not too rare to care. 

Thank you for your support!
Shelley Bowen