rare disease advocacy through writing

Sanfilippo mom Val discovered that writing a monthly column for an online magazine is not only a powerful and therapeutic way to reflect on her own journey, but it's helped other families feel less alone in their rare disease journeys as well.

Sanfilippo mom Val Byers, EdD, is an education researcher living in Spring, Texas, with her husband, Tim, and their two children, Will and Samantha. Valerie became a rare disease advocate in 2015 following Will’s diagnosis of Sanfilippo Syndrome, a degenerative and fatal genetic disorder.

Val is a board member of the Cure Sanfilippo Foundation, where she works to raise the public profile of Sanfilippo syndrome to support research and clinical trials.

She also writes a monthly column for Sanfilippo News, called “Plot Twist,” where she reflects upon her family's journey in the hopes of making other readers feel less alone in their own respective journeys.  

To see Val's columns, click here: https://sanfilipponews.com/plot-twist-valerie-byers/.

To learn more about the Cure Sanfilippo Foundation, click here:  www.curesff.org.

​In this clip, Val shares her story of how she got involved with writing.

---

It was a beautiful avenue for me to reflect on our journey"