advocacy

This past week has been heavy on my heart, with my mind full of anger and frustration. I just want to go to the driving range and hit a bucket of golf balls to release some of the stress. While these feelings are not about my journey, they are…

Sometimes I wonder who designed spaces that are labeled accessible. Were the engineers or architects disabled? Did they actually understand the needs of wheelchair users, or did they simply do the minimum needed to comply with the Americans with Disabilities Act (ADA)? Was a disability plaque attached just for…

In today’s world, nurses are in high demand, and thus they’re also hard to come by. Because of this, my 4-year-old son, Cayden, who has infantile-onset Pompe disease, is unable to attend preschool at the moment. Awhile ago, I wrote a column about…

For me, getting diagnosed with late-onset Pompe disease was a relief. Although there’s no cure, treatment is available to help slow disease progression. After starting treatment, I wondered what my life would look like. Would I have to stay home? How long would I be able…

I made it through another year living with late-onset Pompe disease. That puts me at four years on this journey. As 2023 kicks off, I’m starting year five. I’ll be another year older and hopefully wiser come St. Patrick’s Day. We finished the holidays with a big surprise.

I like to say that I’m a walking billboard for Pompe disease advocacy — not just by the way I walk, but by the messages on my clothes. I’m a huge sports fan and go to a lot of sporting events, so after getting my diagnosis of…

If you have a rare disease or are the caregiver of someone with a rare disease, then you’re probably no stranger to research companies reaching out to you. Companies conduct a range of studies and seek out those living with rare diseases to gain more information. While everyone…

When you have a child, you have so many concerns and thoughts. One came up soon after I had my son, Cayden, four years ago. He was diagnosed with infantile-onset Pompe disease at just 1 month. At the time, I had no clue whether I wanted others to know his…

A Russian military plane crash near Tetiana Zamorska’s home in Kyiv, Ukraine, was a sign that it was time for her and her family to leave. The treacherous, 34-hour pilgrimage that ultimately brought the group of eight by car to temporary accommodations in neighboring Poland last month was physically and emotionally difficult,…

The National Organization for Rare Disorders (NORD) has updated its State Report Card to make it more digitally friendly and added telehealth to its categories of rare disease policy issues in a nod to its increased use during the ongoing COVID-19 pandemic. NORD’s report card project began seven…