Introducing the Friedreich’s Ataxia News Forums

Bionews Services is launching a new project on Jan. 22: the Friedreich’s Ataxia News Forums. This will be a place for all of those affected with FA — patients, caregivers, family members, close friends, and significant others — to sign up, post, and comment on messages about daily living and to provide encouragement for each other.

Ideally, this will be a space where we can let our guards down and be ourselves and discuss matters both great and trivial that few others understand. We hope it will become a place where members of the FA community can feel that they belong.

Belonging has always seemed out of my reach. In my small town, FA was pretty much unheard of; I didn’t know anyone else who had it, apart from my younger sister. As my clumsiness worsened, my 12-year-old self loathed getting picked for sports teams.

***

“We’ll take James,” one of the team captains called, as James breathed a sigh of relief and ran over to his new teammates. James was unusually skinny and tall for his age, but his unathletic lankiness seemed to outweigh the potential of the remaining boys: Eugene and me, the only two in my PE class of over 50 boys left to be chosen for a kickball team.

The Friedreich’s Ataxia News forums are a place to connect with other patients, share tips and talk about the latest research. Check them out today!

The last choice fell to the other captain, who happened to be my cousin. He seemed eager to begin the game and frustrated that the final selection of teammates — the bottom of the athletic barrel — fell to him. His leg vibrated nervously (a family trait that my dad has, too), as he sighed with dissatisfaction.

I realized that the situation was going badly when my cousin avoided my eyes, which were silently begging him to pick me. He made his choice. “Eugene,” he said, and the newly formed teams ran to the kickball field. I slunk behind my team by default, dragging my feet, feeling unwanted.

***

I’m not sure why I remember that moment so clearly. It’s insignificant in the story of my life. I’m not still brooding over not getting picked for a kickball team in middle school, nor am I bitter at my cousin for not picking me. (He solidly proved his love when he served as a human wheelchair for me years later when I needed it, but that’s a story for another time.)

I think the only reason I remember and can relay it now is because of the feeling it left with me: a sense of being unwelcome and alone. (Sarcastic aside: At least I didn’t get carried away and translate that feeling into an emo song that explores what it’s like to focus on lonely philosophical concepts during high school.)

Everyone feels alone at times; this feeling can be particularly prevalent among those with rare disorders. It was difficult for me to find others who could relate to my experiences with FA. With this forum, Bionews Services hopes to alleviate that sense of loneliness.

Sing it like no one’s listening.

But now, someone is listening.

You belong there.

I pick you for my team.

Join us, FAers. Tell your story. We want to hear it.

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Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.