I am a freelance columnist for Friedreich's Ataxia News. I was recently published on my column, My Darling Disability, and I wanted to share it here, too. You can either read it by following this link, or just keep scrolling below.
I’ve always been fascinated by stories featuring people who confront adversity by fighting against all odds to do extraordinary things. I’ve cried during “Extreme Makeover: Home Edition” or when Ellen DeGeneres has handed a life-changing check to a single parent or a disabled child. I become fascinated with their stories. I never dreamed that I would be a story of perseverance and reward.
When doctors diagnosed me with Friedreich’s ataxia (FA) at the age of 25, I snapped into “Team Kendall” mode. I made a website and updated my social networks with information about FA. After I dispersed the initial information, it was time for action.
I threw myself into rideATAXIA by purchasing a recumbent Catrike and training for my first ever bike ride. And I fundraised … hard.
I put everything I had into that first rideATAXIA event. My diagnosis was still so fresh (I was diagnosed in late August and my first ride was in March), so I had a lot of momentum. I was shameless in my campaigning for support and donations. And wow, people pulled through spectacularly. I had a huge team of riders that year and we raised $38,360! (All donations raised during rideATAXIA go directly to the Friedreich’s Ataxia Research Alliance, or FARA.) I was blown away by such a quantifiable, tangible showing of support.
Asking for donations for a cruel, progressive disease like FA is so humbling. And tricky. When participating in breast cancer races, MS 150 bike rides, or Step Out diabetes events, people know what they’re donating to. They know these (worthy, horrible, cruel, unfair) diseases. But because FA is so rare, many people don’t know what donating to Team Kendall means. So, we have to overcome the hurdle of educating when asking for support.
I never wanted to be the girl with a story. I just wanted a wonderful, easy, happy life. But FA happened. I chose not to suffer in silence. I decided to humble myself in front of all of my friends, colleagues, acquaintances, and family to ask for help.
It all boils down to the future. I want a future free of FA. I want it so desperately that it consumes me. I am doing all I can think of to make that happen. I have registered for FARA’s patient registry, participated in clinical studies, enrolled in a 48-week clinical trial, posted on social media about FA, shared my story, and fundraised through rideATAXIA year after year.
When I receive donations, I’m hit by a mix of emotions. No matter the amount, receiving a donation is such an honor. It’s always so exciting! It’s like a tangible thing that indicates someone heard my story and they are fighting with me. It is a way to validate my struggle with sympathy. I never feel pitied or belittled. I feel empowered. I feel obligated to honor that donation by fighting harder. I want to earn generosity.
I have received $20 donations and $18,000 donations. Every single one is celebrated and appreciated more than I know how to articulate.
Fundraising isn’t fun for me and I don’t like being vulnerable by asking for help. I’m kept up at night thinking about the friends I have alienated or embarrassed by asking for support, but such actions are necessary for my future. These donations aren’t just filling a ticker to make me the “top fundraising team.” These donations fuel life-saving research for FA warriors.
The next time you see a person fundraising for Friedreich’s ataxia research, don’t feel like you have to donate a chunk of your savings account to make a difference. Any amount is significant! Think about it: If five people donate $20, that’s $100 fueling FARA!
Trust me when I say that I hope this is the last time I’ll be asking for donations. I want to cure this disease and move on. I want to throw all that money into an epic celebration party when we cure Friedreich’s ataxia. Every year, I hope and pray for my last rideATAXIA, because that will be the year that we cure FA. But until that day comes, I continue to humble myself to ask for support.
Now I will shamelessly plug my 2019 rideATAXIA Team Kendall fundraising page with a preemptive thank you!
