By: Dillon Loomis-Head
For the past 11 years, The Hook Family; Tom & Paula Hook, who have two daughters with Friedreich’s Ataxia (FA), have dedicated, hosted and committed to creating the event that many know as FA Woodstock. This event has meant so much for many of people. I am honored to be writing this last blog post/article about this event; due to its significance to me personally.
In 2013, I was diagnosed. At first, I tried to ignore everything going on with me, but that was not very easy to do. FA Woodstock 2018 was my first experience of going to an FA event that was not connected to Philly Weekend; The FA Symposium & rideATAXIA, I’ll be honest, I was nervous and far from home; 669 miles to be exact, I was also in a very dark place both emotionally and mentally. The moment my mom and I pulled into the Flying H Ranch, there was a shift in energies and it made me feel welcomed.
This family has opened their home/ranch and their hearts to everyone within this community. They also have facilitated a space for Dr. Lynch and his team to collect blood samples and over the years different other forms of research like hearing and speech tests. This year, they added retina scans of the eyes. This event has been an extremely valuable resource for research purposes but also for a community as a whole.
FA Woodstock was the event that helped me accept that FA is just a piece of the puzzle that makes-up Dillon. Though I was only able to go to this event 3 times, the memories, friendships, the stories, the experiences, the contributions to research, the drive and the passion to fight for a treatment/cure does not go unrecognized. This year, Dr. Lynch’s team collected a little over 100 samples from FAers, Carriers and from Controls; which to some may not seem like a lot, but let me tell you it really is. It would take the team at least 3 months to collect that many samples back in clinic.
The event was full of fun activities again. From having the ICONIC FA Woodstock tie dyes, warm hugs and reconnections, Lori’s Craft Corner, to having the availability of soft-serve ice cream, to Jamie’s Happy Hour, to being able to go for a swim, Reflexology from Eileen, beautiful fireworks, group photos and heartfelt & bittersweet farewells.
I personally want to say: Thank You to The Hooks, their friends, family and volunteers for everything they have done over the past decade or so. Words cannot express enough appreciation that this community, FARA, Dr. Lynch’s team and the researchers have for you all; each one of you, you may feel that you don’t have an impact, but you do. Thank You, Thank You, THANK YOU for everything.
Each of you should feel proud for being able to open your hearts to people you just met and welcoming them for who they are. With many diverse therapies in or coming to clinical trials, we are at an important place in the progress of FA research. So knowing that there are even more people who have our backs, that is invaluable.
As I have stated above and on personal accounts, this event “broke me out of my shell” and for that reason, FA Woodstock will forever a very special place inside me. So, Farewell for now.
By: Dillon Loomis-Head