On our FA journey, everyone has something to offer

As the lecturer’s voice echoed in the large hall, I sat nestled between friends. This was a lifetime before my 12-year-old daughter Amelia’s diagnosis of Friedreich’s ataxia (FA), and before I was gearing up for a life of service, first as a volunteer and then as a social worker.

I was there to learn how best to engage future clients, and my notes were filling up the page. A story was shared about a woman who’d lost everything in a flood. A crew of volunteers had built her a new home, supported by donations from people the woman would never meet.

While standing on the threshold of her new door with tears in her eyes, she opened her hand and deposited three rusty nails into the hands of the volunteers. It was all that was left of her former home — all she had to offer. We were reminded to graciously accept what others offer as a sign of their gratitude. By doing so, we empower and remind them that they have inherent value.

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In my 21-year-old mind, I was ready to be that person who, in service to others, would be on the receiving end of such a gift. Meanwhile life was rolling up its sleeves to serve me huge helpings of humility.

When Amelia’s health began failing, we found ourselves on a three-year diagnostic odyssey. Professionals repeatedly told us that many rare diseases don’t have clinical trials. Yet the first step in finding a treatment is identifying a cause. So once we finally received a diagnosis, we found some clarity and hope. One example of this is the Friedreich’s Ataxia Research Alliance’s (FARA) research pipeline.

We arrived on the FA scene after the parents and supporters who came before us had done an incredible amount of work. The metaphorical building was under construction. I stood at the threshold feeling as though I’d lost everything in the flood that is FA, and all I had was a handful of rusty nails.

Columnist Elizabeth Hamilton made a granny square lap blanket to help raise funds for FA research. (Photo by Elizabeth Hamilton)

One of my core values is that we all have something valuable to contribute. We just have unique ways of bringing those things forward. Whereas I put pen to paper on my journey with FA, another family might put voice to microphone to raise funds and awareness.

In Oklahoma, the Gehr family has taken their passion for the performing arts and established a remarkable annual event known as the Cure FA Soirée. This year marks its eighth anniversary. The event, which will take place on June 7 at the Omni Hotel in Oklahoma City, will be an evening dedicated to the arts and benefiting FARA.

I’ve had the privilege of getting to know this family, including son Michael, who has FA. As I thought about what I could contribute to the event, one thing I’m most passionate about came to mind: yarn. I don’t just love yarn, I’m obsessed with it. Graciously, the event planning committee welcomed my family on board, and we began crafting to support a silent auction.

One of the tools I’d made for Amelia when her dexterity began to slip was a washcloth that serves as a pouch to hold her favorite bar of soap. Its drawstring can be used to hang it up, and Amelia’s hand can slip into the handle to help her hold on. I made several of them while my eldest daughter, Katherine, crafted beautiful jewelry.

I’d always wanted to make a granny square blanket, too. I love the bright colors offset by black trim. Up the middle of the blanket, I placed gray squares to represent how I feel about this disease, particularly regarding loss and mourning. Then I spent hours crafting squares full of color as a reminder that in the midst of the hard parts of FA, we can find beauty. Shipping this blanket off to Oklahoma for the Cure FA Soirée felt so therapeutic.

Going back to that lecture hall I mentioned above, years later, I remembered the final part of the speaker’s story about the new home and the rusty nails. While the woman’s life had been changed, so, too, had the lives of the volunteers.

The experience was so powerful for those involved that they abandoned their careers and dedicated their lives to serving others in various capacities. The rusty nails were combined and made into a piece of art. Sometimes what can seem like a simple act can have a ripple effect across more lives than you can count.

We all have something to offer.

Note: 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. The opinions expressed in this column are not those of Friedreich’s Ataxia News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Friedreich’s ataxia.