Columns

New Hampshire has its 4,000-Foot Challenge: Climb all 48 of the mountains in the White Mountain National Forest that are at least 4,000 feet high. Colorado has the 14ers Challenge: Climb all of the state’s peaks that rise at least 14,000 feet, of which there are…

Earlier this month, I was invited to be a guest on “The Purple Couch,” a podcast sponsored by the International Rett Syndrome Foundation dedicated to all things Rett syndrome, to share how I made Halloween more inclusive for my late daughter, Cammy. Purple is the color associated with…

There are three things it would never occur to me to do that some people actually do: Catch a rattlesnake and eat it.  Play hockey underwater. Board a commercial airliner wearing a Halloween costume. This last one comes to mind because of an article I saw…

My two most recent columns were about the documentary “Silent Angels: The Rett Syndrome Story,” and how it came to be. The film was broadcast on television in 2000, the year our daughter Abby, who has Rett syndrome, turned 3. When I rewatched it to write…

When our late daughter, Cammy, was diagnosed with Rett syndrome in 2011, our family entered a world we knew very little about. Like so many families receiving a rare disease diagnosis, we had endless questions, and it was difficult to find answers. Over time, the International Rett…

Last in a series. Read part one.  In part one of this tale, Barry Ross Rinehart told us how his casual offer to help a stranger with slides for a talk about Rett syndrome led him to direct a full-length documentary, “Silent Angels: The Rett Syndrome…

First in a series. It’s October, which means it’s Rett Syndrome Awareness Month, which means it’s a good time to have an email chat with Barry Ross Rinehart. So I did, and he was gracious enough to tell me about the making of “Silent Angels,” a documentary…

Herewith another installment of the T-Shirt Chronicles, in which I relate episodes from our family’s life with Rett syndrome as represented by garments in our ridiculously outsized collection of T-shirts. Some of those T-shirts are mine. Some belong to my wife, Donna, or my daughter Abby, who has Rett…

My late daughter, Cammy, was diagnosed with Rett syndrome in 2011. After a few months of being connected with the International Rett Syndrome Foundation, participating in the foundation’s Natural History Study, attending a conference, and meeting other families living with Rett, I became a point of contact for…

National Grandparents Day was this past Sunday, and it was great to see social media photos and videos of grandparents supporting and loving their grandchildren who have Rett syndrome, the condition that my daughter Abby has endured for 29 years. Abby, alas, has to be content with my…