Amy De Leon has been helping Hope For Ataxia in various ways for quite a while. She is passionate about helping spread Ataxia awareness.
Joining and contributing to the group on Facebook was how I first dipped my toes in the HFA water. I attended a virtual support group meeting sometime in early 2019. Now I get to guest host and assist with special programs! The meetings have been, and continue to be, a highlight in my week. From the non-judgemental, social interactions to the inspirational guest speakers, I always learn something new and make connections.
Initially, fear and desperation drove me to HFA, but it was enlightenment and camaraderie that kept me coming back. Most of what I read was bleak and scary. I appreciated learning about the varying methods people use to deal with challenges and continue with their routines. I was both attracted and elated that HFA seems to be full of positive, proactive people!
Staying involved is easy because I simply remember how scared I was when I was 1st diagnosed in 2008. Thinking about the racing questions my (then) husband had and the panic my children felt, keeps me determined to clear up how an Ataxia diagnosis doesn’t have to be terrifying. Yes, it is life-altering, but that’s the nature of many events in life.
It’s very fortunate that I can now say no to things that no longer suit me – which means I have more time and energy to devote to things I’m passionate about! Creating art is so much fun – it’s what I love to do. I’ve discovered that besides using my fine motor skills, it also flexes my problem-solving skills and keeps those gears churning! Of course, I continue to struggle through my daily chores: cooking, making my bed, laundry, taking out the trash … I feel like I’ve won a gold medal at the Olympics when I figure out how to get something done that I used to have no problem with. Right now I’m riding my recumbent bike every day but will soon alternate with my elliptical.
Raising awareness, making connections, or providing reputable information about Ataxia are equally important and what I believe HFA does well. Raising awareness is crucial to raising research dollars. Making connections is essential to keep an organization growing. Providing reputable information is the best way HFA can establish credibility and a good reputation. Who wouldn’t want to be part of that solution?
When anyone is wanting to learn more about Ataxia, I hope they find HFA and the resources Mark and Courtney (and others) have worked tirelessly to gather/create. It is my hope that HFA will come up in a top 3 search of “Ataxia” and that newcomers will join in the support group meetings and not only make new connections but also leave every meeting more assured and confident that they’ll be OK.
My many friends (aka cheerleaders) and adult children motivate and support me in any endeavours I tackle! My brothers and sister are always researching any relevant information and happily passing it along. Whether it’s my son providing comic relief, my daughter being more of an adult than I am, or my family and friends joining in an HFA activity with the same end goal. I am proud to volunteer in this organization and look for ways we can spread our positive vibe!
Amy also runs the Ataxia Art Emporium group on Facebook. Click here to check it out!