In June of 2015, our 11 year old daughter Anna was diagnosed with a rare genetic progressive neuromuscular disease. We had never heard of Friedreich's Ataxia, and certainly never imagined that her occasional trips and stumbles would lead us down this path. But with amazing doctors and health care professionals, supportive family and friends, and the amazingly brave and resilient Anna, we have joined a loving group of fellow FA families and we strive together to find a cure.
We formed 'hope for toMORROW' as a way to organize our fundraising efforts for the Friedreich's Ataxia Research Alliance (FARA).
Every year at the Energy Ball in Tampa, FL, a film crew donates their time to document the lives of patients and families living with FA. Anna was asked to be in the video for the 2016 Energy Ball, in which her parents, Ben and Kristin, attended. They met other patients and FAmilies, researchers and doctors, and pharma reps who are tirelessly fighting to find a cure.
Watch the video to gain insight into the lives of those living with FA.
We have been given a gift of such extraordinary friends and family, coming together to join in our efforts with FARA to find treatments and a cure for FA (Friedreich's Ataxia), for our daughter Anna and all those living with FA.
We have been inspired by all those who have acted before us and strive to continue in these efforts together.
“Acting alone, there is very little we can accomplish.
Acting together, there is little we will not accomplish."
FARA Founder and President