When I was a kid, I liked to build things with Legos and Lincoln Logs. I had Tinker Toys and Erector sets to build cars, cranes, buildings, and more. All of the blocks, bricks, and logs were of different sizes and shapes, and when they were put together, I had…
awareness
I’m going to be dating myself here, but let’s go for it. Not quite the Stone Age, but around the time “The Flintstones” was on television, I remember watching the “MDA Labor Day Telethon” one year with my parents. I wasn’t sure why we were watching this and not some…
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 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…
Columns
Why I Choose to Share Our Story
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…
The 9th annual International Pompe Day will be celebrated on April 15 to raise global awareness of Pompe disease and highlight the strength and resilience of the patient community. The event, with the slogan “Together We are Strong,” is organized by the International Pompe Association (IPA) — a…
Since 2008, Rare Disease Day — the last day of February — has brought together patients, caregivers, family members, friends, and advocates from around the world to raise awareness and improve equity for the more than 7,000 known rare diseases that affect more than 300 million people. In 2022, the…
I take pride in teaching children about disabilities. The earlier they learn, the better. These small lessons can be very beneficial as children grow up and learn that everyone is different. My 3-year-old son, Cayden, is only 15 months younger than my little brother, Larry Jr.,…
Nominations are now open for the worldwide 2022 Black Pearl Awards from Eurordis-Rare Diseases Europe. The 12 award categories recognize individual advocates, policy makers, researchers, organizations, and companies who work to make a difference for the global rare disease community. The deadline for nominations is Sept. 10…
In an effort to raise public awareness and increase understanding of Pompe disease, the 8th Annual International Pompe Day will be celebrated on April 15. This year’s theme is “Pompe Around the World,” the International Pompe Association (IPA) announced. The event’s slogan is “Together We Are Strong.” “The…