We had a young visitor this past weekend who met my husband’s disability with frank curiosity and innocent sweetness. The guest, Todd’s 6-year-old great-nephew, watched with interest as I set up his Uncle Todd at the computer. “What is that for?” he asked as I put Todd’s sip-and-puff…

When my 12-year-old son, Isaac, went to mow the grass last week, he noticed that one of the tires had come off the rim. My husband, Todd, purchased the zero-turn lawn mower nine years ago, a few years after his ALS diagnosis, when his arms were too weak to…

The rarity of amyotrophic lateral sclerosis (ALS) in children makes it impossible to realistically conduct clinical trials of experimental medicines in this population, researchers across Europe argue in a paper. “Given the absence of consensus on pediatric ALS as a disease entity, the extremely low prevalence of ALS in…

The National Alliance for Caregiving, in partnership with Global Genes, has issued a free guidebook, available online, that offers resources and support for caregivers of children with rare diseases. “The Circle of Care Guidebook for Caregivers of Children With Rare and/or Serious Illnesses” was designed…

“What the heck happened to that guy?” a young boy called loudly to a woman leading him and other preschool children across the parking lot. I was loading my husband, Todd, into the back of our accessible van, having just gotten our COVID-19 vaccinations. It was the first time…

I cried as I listened to an episode of the “Everything Happens” podcast. Writer Samantha Irby described growing up with sick parents. When she was 9, her mom was diagnosed with multiple sclerosis, and her dad struggled with heart problems for years. They both died when she was…

The number of treatments for children with rare diseases has grown over the past decade, according to a new study. However, despite the increase, nearly 7,000 rare diseases are still lacking treatment. And federal incentives to boost treatment development for these rare diseases have primarily focused not on creating new…

Even though November is National Caregivers Month, I think we also should include Good Samaritans and caring strangers. Everyone who opens a door or helps carry a bag, hands us items off the top shelf or points us in the right direction; a big thank you…