My name is Stephen Martin. I am trying to get access to a nasal spray for this three year old boy, Brody DeVault.
He has Creatine Transporter Deficiency. The creatine in his bloodstream does not make its way to his brain. Without treatment, he will live a life of intellectual disability, and probably die young from a seizure.
There is a treatment which has finished Phase 1 clinical trials which may help him. I have spoken to the manufacturer, they will provide it to him under Montana's new law SB535.
But only if we can get them official promises from HHS that they will not be punished for treating a patient under a state law.
I have a meeting with the FDA on the 18th. Right now the single thing which most increases the likelihood of getting Brody treatment, is making sure that President Trump becomes aware of this before that meeting.
I'm posting this in the hopes that I can bring this to the attention of people who can, in turn, bring this to the attention of President Trump. The meeting is in 6 days.
Thank you for your attention to this matter!