I'm Mama to 7 year old Tallulah Moon Whitrod and Co-Founder of ACNC registered charity Genetic Cures for Kids. Our charity's first mission is 'Our Moon's Mission' - to find a cure for Tallulah Moon's ultra-rare neurodegenerative disease SPG56.
Rare diseases are rare until they affect someone you love. And get this: developing treatments for rare diseases IS possible. The problem for our kids is, rare diseases don't attract enough pharmaceutical support to create treatments and trials because it's hard for businesses to make money out of small patient populations.
Parents are often left to navigate the rare disaese mission alone.
We've been working hard for our SPG56 community for a few years now.
Thanks to monumental efforts of incredible research teams in Australia and the USA, we are poised to bring a manufactured gene therapy to clinical trial that could cure SPG56. This is an historic moment: addressing an urgent unment need for a progressive disease that until now, had no treatment option, leaving families like ours fearing the future for our kids.
Help us get across the line! Help us fundraise to get to clinical trial and cure SPG56 in time for Tallulah and children in her position!
Join us today to support children with SPG56 and other rare diseases. Your involvement in our research helps pave the way for discovering new treatment options for a range of other rare conditions.