To those feeling too rare on Rare Disease Day (Feb. 28) let the following empower you. The saying “hidden in plain sight” can take on a new meaning when you have a rare disease. I’m rare because I have a huge wheelchair and tracheostomy, but that doesn’t mean I’m…
Soaring With Hope – a Column by Ari Anderson
Wouldn’t it be wonderful if we could easily put into practice the lessons we learned growing up? We were taught to think about the effects of our decisions, but sometimes it is difficult to know how our actions may affect the lives of other people. For those of us with…
To make my sometimes hazardous life with SMA less scary and more exciting, I tend to think of myself as a pioneer. As my previous column noted, I carry a lot of “baggage,” or experiences, during my travels. In 1803, as PBS noted, U.S. President Thomas Jefferson commissioned…
Doesn’t it feel like we all carry a lot of baggage in life? If we could just forget about all the negatives, we could live on cloud nine. What if I told you that we would be permanently stuck on ground level, going nowhere in life, without all the heavy…
Recent Posts
- Study reveals front and back of brain develop as two separate organs
- After 29 years of living with SMA, my body doesn’t know how old it is
- Disability invisibility and the loneliness of being overlooked with SMA
- Being alive to witness history in SMA research, treatment
- Stopping to reflect on who we are becoming
