In the News

Nationwide Childresn's SLC6A1 gene therapy shows early promise.

Insurance denied an $800,000 drug twice. A state-run outside panel helped a North Carolina teen get it.

A KC family is searching for a miracle to find a cure for their young son’s rare genetic disease 

 Kim shares her inspiring journey as a passionate advocate for her son, who battles rare disease, SLC6A1.

The cause got double the donation thanks to the kindness of a young girl who faced her own challenges.

Boy with rare disease enters drug trial as family holds onto hope for cure.

ProActive Solutions, one of the leading IT solutions providers in KC celebrates 25 Years by giving back.

KC family fighting for cure to rare disease with help from Tyrann Mathieu

It was then that she decided to fight like a mother to help save Charlie from SLC6A1

 With no cure for her son’s rare disease, this mom decided it was time to “fight like a mother” 

Family uses stay-at-home order to start new challenge for toddler’s rare disease

 Home cuts for a cure raising money to research rare disease

Chiefs join Kansas City family's fight against rare disease

Signed Chiefs football to help fund rare disease cure

KC Royals all-time great going to bat for 2 year-old with rare disease

Kansas City family searching for million dollar miracle for toddler with rare genetic disease

KC family raising awareness, money to cure rare disease