Spotlight Series #3 of Rare Disease Week by Nasha Fitter

Nasha Fitter is Co-Founder of @foxg1research, Director of Rare & Neurological disease division of @ciitizenstories, mom to 3 kids, youngest of whom is Amara who just turned 5 and has Fox-G-1 Syndrome. Nasha is also one of my best friends who went from a place of grief to hope & purpose, this is her amazing story during rare disease week.


Key Takeaways:


- 1 in 20 people will have a rare disease in their life, we must raise awareness and encourage people in their philanthropy to think of rare diseases as mainstream

- One can go from feeling powerless, incredible grief, immense fear, a victim of circumstance to gratitude, wanting to make a difference and changing the world. Let the grief move through you.

- The greatest tragedy can become your greatest inspiration.

- When the purpose is so pure, it can drive and fulfill you with joy. People will join you in the journey.

- Mindset of an entrepreneur, excellence, hard work, love & dedication is key in running a successful foundation that will work towards finding a cure.

- Finding like minded parents has been key in this journey.

- We have to make our society more inclusive & move towards a place of acting with love & kindness towards everyone.

- Handbook for foundation : organize a group, sign up for 501, think like a problem solver, don’t be afraid of something difficult, you can learn anything, have a strategy, set clear goals, do things to the highest level.

- Handbook for parenting: do not have any expectations of your children, enjoy their trajectory, partner with them, look for beauty in everything & enjoy life in slow motion. The days are long but help & enjoy your children.

- No such thing as a tragedy, it’s our perception of it which is how we will define our quality of life.


Great resources out there @globalgenes @onceuponagene.podcast

Support @foxg1research @syngapfund & use @ciitizenstories