Team Hennessy

My brother Zack and I were both diagnosed with the rare disease, Friedreich’s Ataxia, (FA). This revelation was devastating for our family as there is currently no cure. Our family was not very open about the diagnosis to protect our privacy and not wanting people to feel sorry for us. That was really a mistake because all of our friends and family wanted to do was to help and support us. This was how Team Hennessy came to be.

Team Hennessy is a group of family and friends dedicated to raising awareness and funding for research to find a cure for Friedreich’s Ataxia (FA). The team has participated in the national rideATAXIA fundraiser for the past 5 years, which is a local bike ride and social event with FA families supporting Friedreich’s Ataxia Research Alliance's urgent mission to find treatments and a cure for FA. Due to COVID 19, the past 2 events have been virtual challenges where Team Hennessy members achieved personal exercise goals for the month of June and raised funding in the process. (For more information about rideATAXIA and FARA, visit curefa.org )

We are so grateful for the members of Team Hennessy. One member designed our team shirt to show support when and wherever we go. (Thank you, Jennie Drummond!) Team Hennessy: Team Shirts If you’d like to sport one of these awesome shirts, all proceeds go to Team Hennessy’s efforts to help fund research to find a cure. Team Hennessy has also sponsored other events like a really fun wine tasting fundraiser at Page Mill Winery in Livermore, CA where so many members of the team attended. We had a really great night trying some fantastic wines, nibbles, and sharing good company all for this amazing cause. Thank you to everyone who attended and to Page Mill Winery. We hope to do this again soon when the decline of COVID-19 pandemic allows.

We believe in our power to work together to affect the pace of Friedreich’s Ataxia (FA) research. Please reach out if you would like to join the team, participate in future fundraising events, or with any ideas for fundraising opportunities or ways to raise awareness. Team Hennessy appreciates any support and helps to move towards treatments and a cure for FA.

I started this blog to highlight life with a disability but to also raise awareness for my rare disease and share some other interests. I hope that this helps increase understanding of what it is like living with a rare disease.