One of the most difficult things about having a child with an incurable terminal condition is the feeling of helplessness that comes with it. When Will was diagnosed with Sanfilippo syndrome seven years ago this month, it was crushing to realize that we were going to bear witness to the…

While we may not be talking about Bruno, it’s no secret that Disney’s latest animated offering, “Encanto,” is on the tip of many tongues, especially in families with young children who are captivated by Lin-Manuel Miranda’s songs. Like many parents of young children right now, my car is filled daily…

It’s hard to believe the world is still in the midst of a pandemic that reared its ugly head two years ago. These unprecedented times have disrupted so many lives in myriad ways. One specific way it affects the rare disease community is that many fundraisers have understandably had to…

More than 600 people participated in the 10th annual Rare Disease Week on Capitol Hill 2021, held virtually July 14–22, to advocate for the rare disease community. Hosted by the EveryLife Foundation’s Rare Disease Legislative Advocates (RDLA) program, the event brings together community members from across the U.S. to…

Summer — it’s a season of lots of fun, but also lots of difficulty for my family and many others like us. As I wrote last month, my 11-year-old son, Will, has Sanfilippo syndrome, which makes summer a particularly tough time for me as a caregiver. In addition to…

My sister Abby has a rare, neurodegenerative disease called Sanfilippo syndrome. She was diagnosed in 2017, and life hasn’t been the same since. I’ve spent considerable time reflecting on my role as her sister, not only as a Sanfilippo sibling, but also as an advocate to spread awareness of…