This year’s FARA symposium showcases the power of community

When my children were young, one of my favorite moments was story time before bed. Nothing felt better than having a child under each arm with a good book in the middle.

I know that the lessons from literature can be compelling, and these moments were more than just time to bond. One of the messages that resonated in so many of these stories was the importance of community and collaboration.

One classic that has been retold in numerous ways is stone soup. The story is simple: Someone needing a meal arrives at a village. To solicit help, a stone is produced with the promise that it will make the most amazing soup. Community members become intrigued and engaged, each stepping forward with one ingredient needed for the soup. Someone brings the water, another a pot, and others show up with various vegetables. The result is a delicious meal that meets the needs of everyone who comes to the table.

We often tell children’s stories with the hope that deeper lessons will be learned. But we adults don’t get off that easy. Children are watching what we do and how we do it, so congruence is critical. It reminds me of a variant of a quote originally attributed to Ralph Waldo Emerson: “What you do speaks so loudly that I cannot hear what you say.” I think about this often as I attempt to ensure authenticity and integrity amid my flawed humanity.

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Actions that reflect our words

Last Monday, the Friedreich’s Ataxia Research Alliance’s (FARA) annual symposium was held in Philadelphia, following the globally unifying fundraiser rideATAXIA. Since my 11-year-old daughter, Amelia, was diagnosed with Friedreich’s ataxia (FA) three years ago, she has been to Philadelphia many times for appointments. This was her first experience at a FARA-sponsored event.

Leading up to the event, I was nervous. Amelia is shy, and I didn’t know how she would respond to meeting others with FA. I still feel new to the community myself and am navigating new relationships. Once again, I needed to recalibrate my mindset and lean into trust and hope.

I could not have asked for a better experience for my family. Amelia received warm smiles from adults who recognized her gait and eager interactions once introductions were made. She met other children and teens impacted by FA, and nothing is cooler when you are young than having a teenager talk to you.

Amelia’s older sister, Katherine, also felt embraced and included. She said the highlight of the trip was walking with her sister during rideATAXIA and meeting new people.

Katherine and Amelia Hamilton participate in this year’s rideATAXIA event in Philadelphia, on Oct. 8. (Photo by Elizabeth Hamilton)

Both of the girls witnessed appreciation being expressed for others who brought their gifts and talents to the weekend outing. From working booths and handing out materials to presenting or creating things to build understanding, our collective actions were the stone soup of a community that is working together to slow, stop, and reverse this disease. In the midst of this work, we also saw intentional care for each other along the journey.

Thank you to my FAmily for bringing what you have to our community. We carried your light and example home.

If you missed the symposium, videos of it will soon be available on FARA’s YouTube channel. I would love to see you all in person next year. Perhaps you have a missing ingredient that is critical to our ongoing community efforts.

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.