Help Winston raise money

Thank you all who have donated so far! Because of your generosity I'm able to increase my fundraising goal to $3000.

The work of the Valeria Foundation is a cause that is near and dear to both my heart and mind: how can we create treatments for children with ultra rare genetic diseases that are "too rare to care" for biopharma companies?

The Foundation is named after Valeria (more about her here), who was born with a devastating genetic seizure disease and was one of the first patients treated with a custom genetic medicine developed to her mutation. Valeria's seizures declined drastically, but the side effects were also significant. She lost her fight against her devastating disease in September 2021 at age 3, but her legacy lives on in her parents working to enable this treatment pathway for the millions of other children with rare genetic diseases. 

On mind: I want to dedicate my career to moving these treatments for rare disease from 'proof of concept' to the routine standard of care, learning from Valeria's legacy and enabling treatments for the millions more with rare genetic diseases. 

On heart: as now a parent to a 15 month old daughter, I can't imagine the heartbreak to see your child suffer and feel helpless with  no treatments available. I can't imagine the willpower that Mario and Alexandra summoned to find treatments for Valeria, and their strength now to keep going for the sake of other children with rare disease worldwide. 

It is for children like Valeria and parents like Mario & Alexandra that I am motivated to work every day, and am training hard to race Falmouth.