NOAH AOC

I know. I hate it when retailers start pushing the Christmas buying season months and months before the frost even forms – but I’m joining them this year. As you know, the HPS Network has been super busy this year. We’ve done more outreach than ever before. We’re assisting more people in getting to and...

Karen Tillman has launched a plan to help raise some money for HPS. Go Karen – every little bit helps. Karen has decided to collect pop tops from cans. She’s also collecting Coke points and Pepsi points to earn towards getting prizes for her Human Race fundraiser. If you’re willing to collect pop tops...

For those in the greater Chicago area, this would be a great event to support. The Vision of Tomorrow Foundation not only has been a supporter of the HPS Network, but they're also very interested in funding research into other types of albinism as well. I know this flyer might be hard to read here...

If you’ve ever toyed with the idea of doing your own Hermansky-Pudlak Syndrome fundraiser, now would be a good time. We’ve had a very busy spring and summer at the HPS Network. We’ve attended multiple medical meetings, spoken to thousands of researchers and physicians, marched in the New York Puerto...

Regular readers have seen this egg before. I'm posting it because we've been talking about how people with low vision can indeed do art on the HPS adults listserv lately. I don't have a lot of artwork around as I can't paint as much as I once did. But, I do these eggs around Christmas...

Regular readers might notice that the ad that regularly appears in the top right corner of the blog has disappeared. This evening I got a letter from Google saying that my Google ad account had been shut down. Apparently they detected some sort of thing where someone was clicking over and over and for...

Kudos to Heather and her team in Kentucky that raised more than $1,000 for the HPS Network with a rummage sale. Heather has two sons with HPS. Way to go Kentucky!

I just wanted to send out a great big BRAVO! to Angels in Voice (Candice and Crystal) on their fundraiser last week. They gave a concert (how I wish I could have been there in person) and raised more than $2,500 for the HPS Network. Way to go! Thank you Candice and Crystal, and thank you to all of your...

For those that live in Kentucky, come out and support the HPS Network May 31st at the National Guard in Owensboro. There will be a rummage sale with lots and lots of cool “stuff” for great prices! All proceeds will benefit the Hermansky-Pudlak Syndrome Network. Contributions are also welcome. You never...

The biannual DelVecchio Garage Sale, a.k.a. HPS flea market was held this past weekend. Marie says they made $795, roughly. That's an aweful lot of nickles, dimes and quarters! Way to go DelVecchio family! Marie has been doing this fundraiser for YEARS! It's a neighborhood event! So, if anyone...