Sean Baumstark

Jan 20, 2025 | friedreichsataxianews.com | Jean Ker Walsh |Steve Bryson |Elizabeth Hamilton |Sean Baumstark

Like many people dealing with traumatic medical problems, I vividly remember when I was diagnosed. For me, that happened before they had even identified the Friedreich’s ataxia (FA) gene, so I had to endure lots of difficult testing. Today, the FA gene is identified through a blood or saliva test. My family and I were beyond anxious waiting for answers. Our imaginations ran wild with both the best and the worst possible outcomes on any given day. I’m grateful the internet didn’t exist back then.

Jan 16, 2025 | friedreichsataxianews.com | Kendall Harvey |Steve Bryson |Katie Griffith |Sean Baumstark

This week marks the seventh anniversary of writing for Friedreich’s Ataxia News under the banner of “My Darling Disability.” I’m humbled by the thought that my words have impacted even one life in the Friedreich’s ataxia (FA) and broader rare disease communities, and I plan to continue to honor that responsibility for as long as I can.

Nov 14, 2024 | friedreichsataxianews.com | Marisa Wexler |Susie Strachan |Elizabeth Hamilton |Sean Baumstark

The relationship between Friedreich’s ataxia (FA) patients and their caregivers can be complex. To make it work for everyone involved, it’s important to practice open communication and empathy, and to ask for help whenever it’s needed. Those are the key takeaways from a new webinar, “Stronger Together: Patient and Caregiver Collaboration in FA,” which was presented Nov. 6 by Friedreich’s Ataxia Newsand its parent company, Bionews.

Nov 11, 2024 | friedreichsataxianews.com | Jean Ker Walsh |Marisa Wexler |Marta Costa Figueiredo |Sean Baumstark

A couple weeks ago, I wrote that I was planting bulbs in my garden. I’m still doing that because I always buy too many. They’re just too beautiful for me to pass up!OK, I could pass them up, but I indulge myself. Every fall, I feel overwhelmed. But as the flowers emerge from the ground each spring, I marvel at the gift my tulips (or whatever bulbs I’ve planted) have given me. Hope for next spring’s beauty keeps me planting them.

Nov 8, 2024 | friedreichsataxianews.com | Elizabeth Hamilton |Jean Ker Walsh |Sean Baumstark |Matt LaFleur

Holding the phone to my ear, I exhaled slowly before speaking into the receiver. I’d dreaded getting this appointment on our calendar and had been waiting on hold to talk to a hospital scheduler. Some trips to the hospital are harder than others when managing my 12-year-old daughter Amelia’s Friedreich’s ataxia (FA). This one was for a routine scan involving an intravenous line (IV) to administer contrast dye, an experience that did not go well last year.