NOAH AOC

Durable medical supplies and Medicare changes

Living on the frontlines — Thu, 29 Jul 2010 02:47:00 GMT

Below is a link to a very good article that appeared in the COPD Foundation's e-newsletter. It's about some upcoming changes to Medicare rules regarding durable medical supplies - things like oxygen, CPAPs, TPN feeding etc. To be perfectly honest, I'm not as up to speed on this issue as I should be, but I'll be doing some research. It looks like the changes will first be rolled out in a pilot plan. I see that many in the COPD community are hopping mad about this - and they may have...(read more)

Preschool Classes

Parent of a Child with Albinism — Wed, 28 Jul 2010 04:43:50 GMT

Successful 1st Year of Preschool

Parent of a Child with Albinism — Tue, 27 Jul 2010 18:41:01 GMT

This is the first of several posts that are LONG overdue! There is so much I have to talk about that I hardly know where to begin. Plans for next year are looking really good, but before I start talking about her new IEP, let me just summarize this past year… Lyra had a very [...]...(read more)

Debut of Car That Can Be Driven Independently by the Blind

Living on the frontlines — Tue, 27 Jul 2010 02:40:00 GMT

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Video of the Car for the Blind

Living on the frontlines — Tue, 27 Jul 2010 02:36:00 GMT

For some reason the site won't let me download the video, even though it's a press release. So, I'm trying this - either a video will appear, or a link you can at least follow to the video. Video doesn't seem to be working very well - try this link: http://www.digitalnewsrelease.com/?q=NFB_CarKit#...(read more)

Update on Car for the Blind

Living on the frontlines — Tue, 27 Jul 2010 02:31:00 GMT

Just posting this press release as an update. I know some are following this story. National Federation of the Blind to Debut Car That Can Be Driven Independently by the Blind at Rolex 24 7/2/2010 FOR IMMEDIATE RELEASE CONTACT: Chris Danielsen Director of Public Relations National Federation of the Blind (410) 659-9314, extension 2330 (410) 262-1281 (Cell) cdanielsen@nfb.org National Federation of the Blind to Debut Car That Can Be Driven Independently by the Blind at Rolex 24 NFB, Virginia Tech...(read more)

National Federation of the Blind Successful in Returning Infant to Her Parents

Living on the frontlines — Tue, 27 Jul 2010 02:21:00 GMT

I posted a link to our local paper that covered this story a few days ago. Thought I'd post this as well. It's so upsetting to think these things still happen. I know that even many around me must feel the same way as the social worker, which is down right insulting. I've spent years working with kids. Yet, the only family who takes me up on my offers to babysit (I don't have kids and do enjoy babysitting from time to tome) are the parents of my Godkids. National Federation of the...(read more)

Non-profit provides rehabed computers loaded with adaptive tech software for blind and visually impaired

Living on the frontlines — Tue, 27 Jul 2010 01:29:00 GMT

I am simply passing along the information below for anyone who might be interested. TCVC provides computers, free of charge (with a $100 donation) to visually impaired persons. (Note: This service is available to residents of the United States and Canada.) Our computer program provided 400 computers last year, for a grand total of 3,500 computers distributed to date. The 3,000th computer was awarded on March 25, 2009. Elizabeth Harper received the computer, specially equipped for blind users, from...(read more)

Time is running out to win the $10 iTunes gift card

Living on the frontlines — Tue, 27 Jul 2010 00:46:00 GMT

Now is the time to get your entries in! Send the HPS Network five names and addresses, or five e-mails and their real world names, and for every batch of five, you’ll be entered in this month’s drawing. Send them to: info@hpsnetwork.org. The names are for the capital campaign. This month’s prize is a $10 iTunes gift card....(read more)

HPS Zumba at the Saturday dinner

Living on the frontlines — Tue, 27 Jul 2010 00:32:00 GMT

Jess Lee was kind enough to teach us how to Zumba at conference. Those who attended her session (and a few who just felt the urge) did a little Zumba at dinner....(read more)

Puerto Rico here I come!

Living on the frontlines — Tue, 27 Jul 2010 00:31:00 GMT

I am very excited. For the first time I’m going to Puerto Rico for the HPS Puerto Rico conference. I’ve always wanted to go, but felt it wasn’t a good use of our money to send me because I don’t speak Spanish. It seemed wiser to send others who could be of more help to the organizers there. This year we decided to send me after all. I got a good deal on the ticket and it will give me a chance to meet some of the Network in Puerto Rico, something that is really long overdue. It’s so hard to get to...(read more)

Health Update – am I losing my mind?

Living on the frontlines — Tue, 27 Jul 2010 00:25:00 GMT

This is just a little health update for my personal records – as well as for the entire world I guess – you know, part of the documentation. While I was at NIH Kevin upped my Advair, but told me to come down on the dose after about a month or so. This weekend I had some rather strange symptoms and I’m wondering if it was because of the steroids in the Advair? Who knows, maybe I’m just nuts. I went through about two days of feeling very edgy or anxious for no good reason. It was as if every little...(read more)

(LOW NOISE VERSION) HPS 2010 Saturday Dinner - Ashley and Mervin

Living on the frontlines — Sun, 25 Jul 2010 00:34:00 GMT

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HPS 2010 Friday - Meet/Greet/Eat - Price is Right! and a little Champions!

Living on the frontlines — Sun, 25 Jul 2010 00:31:00 GMT

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The march of the kids

Living on the frontlines — Sun, 25 Jul 2010 00:12:00 GMT

Every year at the HPS Network conference in New York, the kids make a grand entry marching to a song that as to do with the theme. This year it was a Seseme Street song with the Count counting sheep - in line with the slumber party theme since the conference was about believing in your dreams....(read more)

NORD Calls for Statement of Policy on Orphan Drug Development

Living on the frontlines — Sat, 24 Jul 2010 22:01:00 GMT

Below is another press release from NORD. I'm happy to see it and hope that the HPS Network can join this effort. There's got to be a happy medium between safety and dire need. Rare diseases simply can't live up to some of the current expectations of the FDA. Some diseases get special considerations under FDA rules because of their life-threatening nature. The AIDS advocates really charted the way on that effort. But, rare diseases, even though many are deadly and have NO treatments,...(read more)

NORD Reports Progress in Appropriations Bill

Living on the frontlines — Sat, 24 Jul 2010 05:38:00 GMT

The following is from NORD - National Organization for Rare Disorders - I thought many of you would be interested. NORD Reports Progress in Appropriations Bill NORD has been notified that the Senate appropriations bill to establish funding levels for key areas related to rare diseases and orphan products has now been drafted and submitted to the Appropriations Committee. We are delighted to report significant progress, especially on the following two points: The bill includes the first increase in...(read more)

Research funding for rare diseases

Living on the frontlines — Fri, 23 Jul 2010 20:48:00 GMT

This is a press release I thought readers would find interesting. I really want to stress a few points here for the HPS and CHS community. Note the release says there are more than 7,000 rare diseases and only 200 are really being researched by the government. Our disorders are included in that bunch. We can't take that for granted. We have to be active in supporting our researchers both in and out of government. When I first got involved with the HPS Network and became aware of NORD, or the...(read more)

Photos before the HPS Network dinner - showing off the PJs

Living on the frontlines — Fri, 23 Jul 2010 06:09:00 GMT

These photos are by Tommy Tillman - to refresh everyone's memory, the theme of last year's conference was "Believe in your Dreams" - thus, we had a slumber party theme for the banquet dinner. It was fun to see the PJs some folks came up with, but I think Janet and Anthony with their happy face PJs win the prize - grin!...(read more)

Photos from the Albinism Fellowship

Living on the frontlines — Thu, 22 Jul 2010 05:53:00 GMT

Here are some photos Chris took while attending the Albinism Fellowship meeting in June. The Albinism Fellowship has been very helpful in Chris's efforts to build awareness of HPS and the HPS Network....(read more)

Chris Fenlon appointed regional coordinator of the HPS Network in the UK

Living on the frontlines — Wed, 21 Jul 2010 18:06:00 GMT

Contact: Donna Appell, President, HPS Network (516) 922-4022 or dappell@hpsnetwork.org Chris Fenlon, Tel: 01442-399822, Skype: chris.fenlon1, Email: bigrevschris@btinternet.com Date: July 21, 2010 FOR IMMEDIATE RELEASE Chris Fenlon appointed regional coordinator of the HPS Network in the UK Oyster Bay, New York - Chris Fenlon has been appointed regional coordinator of the HPS Network in the United Kingdom. In recent years a number of families from the United Kingdom have sought testing for, and been...(read more)

HPS Family photo

Living on the frontlines — Tue, 20 Jul 2010 23:41:00 GMT

This is the 2010 HPS Network Family Conference photo. Everyone in this photo has HPS, so you can see how widely our appearance varies....(read more)

Update on the Year of the Lung resolution

Living on the frontlines — Mon, 19 Jul 2010 05:02:00 GMT

It will soon be August, and what does August mean? It means that our elected officials will be venturing home to rev. up their campaigns for the next round of upcoming elections. It's a good time to lobby them for the things we need. One item those of us with lung diseases of all kinds are particularly interested in is the resolution supporting the Year of the Lung. I'm going to copy the resolution in it's full form below. It is currently in the House Oversight and Government Reform Sub...(read more)

Win a $10 gift card from iTunes and help the cure at the same time!

Living on the frontlines — Mon, 19 Jul 2010 03:53:00 GMT

A capital campaign is a vital fundraising activity for many non-profits. The HPS Network does our capital campaign every year around the holidays. It stands to reason that people who know those of us with Hermansky-Pudlak Syndrome would be the most willing to make a donation, no matter how modest, to help us in our journey for the cure. We need names though! Enter the Names for the Cure contest! Send in five names and addresses, or five e-mail addresses and their owner's real world names, and...(read more)

More pretty pics I just enjoyed taking

Living on the frontlines — Mon, 19 Jul 2010 03:48:00 GMT

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