NOAH AOC

Here's a press release that has come out from the NFB about a new program they are offering to provide free canes to anyone who needs one but can't afford them. Some of you like my telescoping cane - but this program only includes (at least it sounds like it in the release) the straight, non...

Below is an article I’ve taken (and hopefully no one will mind) from the latest issue of Future Reflections. Future Reflections is a magazine for parents of blind and visually impaired children published by the parents division of the National Federation of the Blind. Because I’m a person with albinism...

Long before I knew I had Hermansky-Pudlak Syndrome, I was very actively involved in advocating for blindness-related issues as a member of the National Federation of the Blind. One of the biggest issues for America’s blind and legally blind citizens is unemployment and underemployment. Let me begin by...

While at ATS I met a really great guy that I wish I could bring to conference and introduce to all of you. He doesn’t have HPS, but he’s a lung transplant survivor with an incredible story. He’s pictured above speaking to the patients at the PAR Breathing Better event at the American Thoracic Society...

On Sunday morning at conference we had a short session that was a panel of four of us telling stories about being legally blind, and what we'd learned from a given experience. This is Carmen C.'s story. It's just too funny! Unfortunately, I can't post the video directly, STILL - not sure...

Every year at conference we have what we call the Family Album. We sit in a circle and everyone says something about what happened to them in the last year. This year's conference theme was "Taking Chances." Here, Karen tells the HPS Family about her year of taking chances. I'm so proud...

You've got to have a sense of humor about HPS. Here are a few things I heard lately that made me laugh. "You all said at conference that HPS stood for Hundred Person Search - well, I know what really stands for - hyper pooping system." A woman with HPS called me this week to brag that she'd...

This is Ivette from Puerto Rico. I’ve probably misspelled her name, so anyone out there, please correct me. She is our inspiration. I’m always so happy to see her every year. She’s got headphones on because she’s listening to the Spanish translator during a session. Ivette has the lung disease of Hermansky...

Many readers seem to like some of the articles I’ve rerun here about various issues that impact the Hermansky-Pudlak Syndrome community. As many of us are legally blind, a lot of those articles have to do with vision. I read the following opinion page article in The New York Times today and I thought...

The joint pain I’ve been describing as mild and annoying graduated to just plain yucky last night. The worst pain was right at the base of my back, and it was definitely more than annoying. It just plain hurt. I came home from work and just laid on my bed in a fetal position hurting. I decided enough...