Living on the frontlines

This past week we enrolled two new HPS'ers on the HPS patient registry. This puts us at 48 to go on the Hundred People Search, but just four to go to hit 1,000 HPS'ers on the registry.

Here's a press release I just thought some would find interesting. FOR IMMEDIATE RELEASE CONTACT: John G. Paré Jr. Executive Director for Strategic Initiatives National Federation of the Blind (410) 659-9314, extension 2218 (410) 917-1965 (Cell) jpare@nfb.org Blind Man Drives Car Independently Avoids Dynamic Obstacles Baltimore, Maryland (January 29, 2011): The National Federation of the Blind (NFB), the oldest and largest organization of blind people in the nation, announced today that for the first time a blind individual has driven a street vehicle in public without the assistance of a sighted person. Mark Anthony Riccobono, a blind executive who directs technology, research, and education programs for the organization, was behind the wheel of a Ford Escape hybrid equipped with nonvisual technology and successfully navigated 1.5 miles of the road course section of the famed track at the Daytona International Speedway. The histori...

We are looking for a few unique situations among HPS'ers. It may be something, it may not. Do you have HPS, know your gene type, know that you are not a 1 or a 4 - and yet have been treated for Crohn's Disease? I'm aware of one type 6. I thought there were some three's out there with Crohn's, but can't seem to locate them now. Also, do you have HPS types 1, 2 or 4 and have a close relative with idiopathic pulmonary fibrosis? (mother, father, aunt, uncle or grandparent?) If so, would you mind e-mailing me at hkdawn@yahoo.com ? Thanks!

Today we added a new person to the HPS patient registry. Since it is still Friday, they count for this week as well - that puts us at half way there - 50 to go! While this is down from last year, we are only six new people away from having 1,000 people with HPS on our patient registry from around the world!

Once again, I'm just passing this information along. It is cold outside, so it is time to start thinking about summer fun and Blind Industries and Services of Maryland Independence 2011! Last year Independence 2010 was a great success and this year it is going to be even better. Independence 2011 is a seven-week residential program where blind and low vision youth entering into the 10th, 11th, and 12th grades in the fall of 2011 will have the opportunity to learn the nonvisual skills of blindness from successful blind instructors. We will return to the campus of Towson University, where students will live in apartments with their blind adult instructors/mentors and learn how to manage their own apartment, cook, clean, grocery shop, manage money, wash clothes, to name just a few things. Not only will students of the seven-week residential program learn the skills of blindness through classes such as cane travel, Braille, computer/technology, and independent living (Home E...

This week we added one new HPS person to the HPS patient registry. This puts us at 51 to go on the Hundred People Search. We are behind where we have been in previous years. I only wish that was likely because HPS'ers simply aren't out there. I think we know better.

Below is a message from NORD I'm passing along. Rare Disease Day Partner Ask Your Congressional Rep to Join New Rare Disease Caucus Thank you for signing up as a Rare Disease Day Partner or Ambassador! Here is one of the easiest, but most important, things you can do to support Rare Disease Day 2011: Write Your Reps Campaign Many of you know that NORD and its advocacy partners have worked with members of the U.S. Congress to establish a Rare and Neglected Diseases Congressional Caucus and that Congressman Joe Crowley (D-NY) has agreed to co-chair it. The launch of this Caucus was originally announced at the NORD Gala in May. However, because of the November elections and following lame duck session, promotion of the Caucus has been low-key to date. Now it's time to bump it up a notch. It's time for all of us to urge our Congressional Representatives to join the Caucus. As one of our primary Rare Disease Day 2011 activities, NORD is asking a...