Living on the Frontlines

Kudos to Karen T - first round of craft sales successful

Living on the frontlines — Sat, 14 Nov 2009 20:24:00 GMT

A big kudos to Karen T for managing the first two of our craft sales. We have two more in December at the Christmas concert. We made just under $300 so far - not bad considering most of our items were small items. Way to go Karen and way to go crafters...(read more)

Drive to help those in Tanzania

Living on the frontlines — Sat, 14 Nov 2009 20:21:00 GMT

The HPS Network is planning to hold a drive at its annual conference, March 19-21, 2009 in Uniondale, NY to help the Canadian non-profit, Under the Same Sun gather items for people with albinism in Tanzania. People with albinism in Tanzania have lived...(read more)

Four new HPS'ers added to the HPS patient registry

Living on the frontlines — Fri, 13 Nov 2009 07:49:00 GMT

It's been a busy week with new families. This week we added four new people to the patient registry at the HPS Network. That means we have 29 to go to meet our Hundred People Search goal for the year. I really think we can make it this year, if not...(read more)

Shop at the HPS Store

Living on the frontlines — Thu, 12 Nov 2009 01:28:00 GMT

As the holiday season approaches, don’t forget about the HPS store on the HPS Network Web site – www.hpsnetwork.org . Yes, our own store is up and running with HPS gear for that HPS’er in your life – grin. For sale you’ll find the Christmas CD by “J”...(read more)

Focused on the $$$s

Living on the frontlines — Thu, 12 Nov 2009 01:10:00 GMT

Lately I feel as though I’m probably getting on everyone’s nerves. I feel like all I ever post about, either here or Facebook or on the listservs, is fundraising. If I’m sounding like a broken record, I’m sorry. I can’t help it. This year is a special...(read more)

Holiday shop for the cure

Living on the frontlines — Tue, 10 Nov 2009 23:10:00 GMT

As the holidays get closer - trust me, they're coming - don't forget that you can holiday shop and benefit the HPS Network all at the same time. If you shop through the www.igive.com Web site, a percentage of your purchases will go to the HPS...(read more)

The drug trial – the final chapter

Living on the frontlines — Mon, 09 Nov 2009 21:49:00 GMT

It’s been a few weeks since this happened. I wasn’t as worried as I usually am about recording it “in the moment” because the film crew came to visit and filmed the entire thing. Our trial of Pirfenidone came to an end and so after three years, I had...(read more)

Twenty years since the Fall of the Wall

Living on the frontlines — Mon, 09 Nov 2009 20:43:00 GMT

There’s nothing like the anniversary of a major historical event to make one feel old – not that I’m complaining mind you. Still, it’s hard for me to imagine that it’s been 20 years since the fall of the Berlin Wall. It’s even harder for me to listen...(read more)

testing, testing

Living on the frontlines — Mon, 09 Nov 2009 05:54:00 GMT

Because I've been so tired, I haven't really felt up to playing with my new toys. One of my new toys is a scanner. It's just your typical scanner, but I was a bit hopeful I could use it to scan in artwork and then apply the artwork to other...(read more)

First round of craft sales makes nearly $100

Living on the frontlines — Sun, 08 Nov 2009 03:54:00 GMT

A big kudos to Karen T and Tommy for manning the season's first craft sale. This particular sale was held for non-profits only and was a first-time event, so hopefully it will grow next year and we'll be on the ground floor. Here are some pics...(read more)

Low vision event of interest to New Yorkers

Living on the frontlines — Fri, 06 Nov 2009 01:32:00 GMT

I'm just posting this as a service to pass along. SAVE THE DATE Thursday, November 19, 2009 The Computer Center for Visually Impaired People (CCVIP) at Baruch College Invites You to a Technology Demonstration on Accessible Book Readers Time: 7:00...(read more)

Intermune files for FDA approval for Pirfenidone to treat pulmonary fibrosis

Living on the frontlines — Thu, 05 Nov 2009 22:17:00 GMT

Below is a press release from Intermune, the company that produces Pirfenidone, the drug the NIH was studying to treat the pulmonary fibrosis of HPS. I thought HPS'ers might like to know that even though our study didn't reach a conclusion, Intermune...(read more)

HPS'ers in New England get together

Living on the frontlines — Wed, 04 Nov 2009 06:44:00 GMT

Here are some photos from a gathering of HPS'ers and their families in New England. Thanks, once again, to our favorite photog, Frankie the Cat! There is a lot of interest in organizing future events in the New England area. I think I've heard...(read more)

More pics from the MGM visit

Living on the frontlines — Tue, 03 Nov 2009 23:21:00 GMT

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It’s been a year

Living on the frontlines — Tue, 03 Nov 2009 02:27:00 GMT

Oct. 15th was a big anniversary – it’s now been a year since I left work. A year ago I was such a mess that looking back it’s hard to imagine that the person I am today, and the person I was then, are one and the same. A year ago it was hard to blog about...(read more)