Living on the frontlines

Below is a press release that was forwarded to me while I was away. I thought I'd post it for those interested. It's kinda neat - grin! SONY PICTURES HOME ENTERTAINMENT PARTNERS WITH WGBH MEDIA ACCESS GROUPTO DELIVER DESCRIPTIVE VIDEO SERVICE ON HOME VIDEO TITLES Culver City, Calif. (Sept 3, 2009) – Sony Pictures Home Entertainment will partner with WGBH Media Access Group to release select film titles on DVD with Descriptive Video Service®, or DVS® as an optional feature for audiences who are blind or have low vision. Descriptive Video Service provides carefully crafted narration of key visual elements inserted into natural pauses in dialogue. Key visual elements are those which viewers with vision loss would ordinarily miss and include actions, costumes, gestures, facial expressions, scene changes and onscreen text. On DVD and Blu-ray™, the DVS track is an Audio option, listed alongside alternative languages, where the menu selection will read “English Audio Descriptive Servi

I'm STILL working my way through all the e-mail from when I was away. Below is an announcement that I thought might interest some - especially with all the Mac vs. PC debate on the HPS Adults listserv! Grin! SAVE THE DATE October 19, 2009 The Computer Center for Visually Impaired People at Baruch College Invites You to a Technology Workshop on “The Accessible Mac” Time: 7:00-9:00 pm Where: Baruch College, 17 Lexington Avenue (between 22nd and 23rd Streets, on the east side of Lexington Avenue), Room 1220 What: Come take a look at the growing selection of Apple products that have accessibility features built in to them. See how they function and how they can work for you. The Mac Book, the iPod and the iPhone will all be presented and discussed. Reservations: Call 646-312-1420 Thanks to all of you who came to our last workshop in September. We had a great turnout and hope to be hearing many new voices joining us for future workshops If you are unable to join us in person, watch

The following information was in the NORD (National Organization for Rare Disorders) newsletter. I thought I'd pass it along to the HPS and CHS communities as we definately qualify as orphan diseases. EveryLife Art Contest: Empowering Artists Affected by Rare Diseases The Kakkis EveryLife Foundation is inviting artists to participate in the first annual EveryLife Art Contest. The competition is open to all artists affected by a rare disease ages five and older, as well as close friends, family members or care-takers of those with a rare or undiagnosed disease. Entries must be received by 5pm on Friday October 30, 2009. For more information: http://www.kakkis.org/ Documents/ EveryLifeRareDiseaseArtContest .pdf

One of our favorite rides (I think it was one of Donna's favorites) at Universal Studios was the JAWS ride. They've built a complete JAWS set from the movie, even reproducing the village and some of the scenes. You go through the ride on a boat, and you know the shark is "out there...." And, it's coming after YOU!

As many of you know, Donna has represented the HPS Network on the Public Advisory Board of the American Thoracic Society for years now - two of which she was president. The ATS publishes a newsletter aimed at lung disease patients of all kinds. They are trying to increase awareness of the newsletter as well as work to bring together the lung disease community as a whole. Here's the link. Check it out: http://www.thoracic.org/sections/about-ats/par/newsletter-and-archive/subscribe.html

Outside of the Mummy ride, they had these men on stilts. Ashley and I got our photo taken with one (on Donna's camera). I looked up at this very cute guy and said, "You know, I've always been into tall men." He didn't seem to have much of a sense of humor.....grin! I thought it was funny.

This was the only roller coaster I rode. I’m not a huge fan of roller coasters, but Mervin talked me into it and so I rode with Julie. It’s based on the movie “the Mummy.” You travel through the tomb tumbling across various hazards that send you dropping and angry spirits that throw fire (real fire by the way) at you. The graphics and characters were extremely realistic, and even though the roller coaster is contained within a building, it was plenty of dropping and turning and spinning for little old wimpy me. I must confess, I enjoyed it, although not enough to attempt another roller coaster. It’s amazing Julie still has working ear drums after sitting next to me screaming, “Oh God, Oh God…” And no, I wasn’t saying it the way some people do casually. It was a heartfelt prayer of panic! I felt a bit dizzy when we got off and figured maybe I shouldn’t push it. Mervin and Julie were much braver, but more on that in another entry.

Disaster was another must-do ride at Universal. It’s in the part of the park that is made to look like San Francisco. Disaster is supposed to be a film company that specializes in disaster films. All through the experience and the ride the staff is playing various characters involved with making movies. When you enter and are waiting to get in, a character playing the role of a director’s assistant/casting agent comes out and gets volunteers from the audience to play the roles of actors. The volunteers are taken away and when you go into the next room they are all on stage. The director gives them a small part to play which is filmed by a camera crew. For example, one little boy was asked to jump off a box and look afraid. Another man was asked to act as though he was falling. Three others were dressed up like corporate executives in hard hats and they were filmed acting as though they were in an earthquake with falling foam rocks coming at them. Poor Donna got picked from the audience

Twister at Universal Studios is one of the attractions that’s more experience than ride, but it was very well done. As you stand in line you’re treated to video interviews about the history of the film, how it was made, some stories from behind-the-scenes about some real tornados that happened near where the film was made, and stories about real storm chasers. I didn’t know, for example, that the movie creators essentially destroyed 12 city blocks of a real town that had been hit by a tornado years before to make the movie. You then enter a movie set of a small-town scene. There’s a gas station and a diner, and then the storm starts. The rain comes and the wind builds up. The lightning strikes the power lines creating sparks that start real fires. The gas station has a real explosion and the heat that hits you is very real – it makes you take a step back for sure. Living in Kansas and having experienced tornados, the only detail they didn’t manage to create was that feeling in the air

Another fun activity we did at Universal Studios Orlando was the Beatle Juice Graveyard Review. I was continually amazed at the quality of the productions we saw both at Universal and at Disney. I felt as though I got to see several Broadway shows within two days. The one thing I will say about the Beatle Juice show for some of my conservative friends (and you probably already know this if you’ve seen the movie) is that the characters make a number of double meaning adult jokes. Kids would love the costumes and the lights and the dancing and singing, and probably would completely miss the jokes anyway – but I’m just letting you know. I loved it. The review had a number of rock’n roll classics played by various graveyard characters such as Dracula, Frankenstein and the Bride of Frankenstein – and of course Beatle Juice himself. I had wondered if they were just acting the parts and not really singing because the singing was so good. It was so hot and the costumes plus the lights – it mus

This was the side of one of the buildings on the New York set. Although it isn't "real" like the photos I took with Letty when I was visiting her, I have a more contemporary (for me) style painting in mind that this photo might serve as a reference point for - so I took the opportunity while it was there. I kind of like it. I like the lines.

After we left Shrek, we bumped into a performance by the Blues Brothers in the replica of streets of New York (I think older 1940s 1050s ish streets.) They were great!!!!!

Here Julie, Mervin, Ashley and I pose for a photo op with our new friends Shrek and Donkey! We went to the Shrek experience, which was a sort of performance. There were several other rides we went on where photos weren't allowed, but that I loved.

It was sooooo hot and humid - you can see the humidity in the air in this photo.

I'm on my way home from Florida. I'm sitting in the hotel lobby where there's internet access killing time before I need to leave for the airport. We had such a blast!!!!! And, of course, I have a LOT of photos. I'm starting to process them. I might not get them all posted in perfect order. The first day we went to Universal Studios. The second day we attended the NOAH adult weekend and I gave a little talk on HPS. The third day we went to Disney and saw Magic Kingdom, MGM Studios and Epcot. Obviously, we didn't see everything doing three parks in one day, but we saw the highlights and we had an absolute ball! Stay tuned for photos!

Here's a link to a news story about the current snag to the project. While I can understand some of the business concerns raised, I have to confess, my mouth waters at the idea of being able to access so many books in any format I wish - wow! http://www.revolutionmagazine.com/news/939822/Google-books-project-hits-snag/

And here's another FYI post - sorry to post it so late! For Immediate Release CONTACTS: Mike DeAngelis CVS/pharmacy (401) 770-2645 Mitch Pomerantz American Council of the Blind (626) 372-5150 Adrianna Montague-Gray American Foundation for the Blind (212) 502-7675 CVS/pharmacy Enhancing Accessibility for the Visually Impaired To Its Web Site and Store Point-of-Sales Devices Initiative Announced In Collaboration with State and National Organizations for the Blind WOONSOCKET, R.I., July 30, 2009: CVS/pharmacy, the nation’s largest retail pharmacy, announced today that it is implementing functional improvements to benefit its customers with visual impairments and other disabilities. The company has installed tactile keypads in all CVS stores and it will enhance its website in 2009. Today’s announcement is the result of a collaboration between CVS/pharmacy, the American Foundation for the Blind, American Council of the Blind and California Council of the Blind. CVS/pharmacy’s action

This press release is admittedly a little dated, but I'm sort of catching up here. I'm running it just as an FYI - but I have to say, this has been an issue of concern for me for some time. It seems self-service kiosks etc. are increasingly becoming the norm in more and more places. They aren't always easy for me to use - and frankly, it's extremely annoying to have to run around looking for store assistance. Where I find them particularly annoying are airlines. The line turns into a giant blob and it's hard to even figure out where the line is to talk to a human and get some help. Contacts: Mitch Pomerantz American Council of the Blind (626) 372-5150 Adrianna Montague-Gray American Foundation for the Blind (212) 502-7675 Blind Community Leaders Applaud Trader Joe’s Commitment to Improve Point-of-Sale Equipment to Benefit Shoppers with Visual Impairments SACRAMENTO, Calif., August 19, 2009 – American Council of the Blind (ACB), the California Council of the Blind (C

Here's another tidbit I'm just passing along because I thought some would be interested. 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 Jennifer EricksonMotorola, Inc.(847) 435-5320 Jennifer.erickson@motorola.com National Federation of the Blind and Motorola to Cooperate on Making Cell Phones Accessible to the Blind Baltimore, Maryland and Libertyville, Illinois (September 14, 2009): The National Federation of the Blind, the nation’s oldest and largest organization of blind people and the leading advocate for making mainstream devices accessible to the blind, and Motorola Inc., a leading manufacturer of cell phones and other mobile communications devices, announced today that they have entered into a cooperation agreement to promote technologies that improve the accessibility of cell phones to blind consumers. Certain future Motorola cell phones

This is just another interesting tidbit I'm passing along to interested readers - this could prove to be very cool. National Federation of the Blind Endorses Google Books Settlement Before Congress 9/10/2009 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 Endorses Google Books Settlement Before Congress Urges Justice Department to Support Settlement Washington, DC (September 10, 2009): The National Federation of the Blind, the nation’s oldest and largest organization of blind people and the leading advocate for access by the blind to digital information, testified before the House Judiciary Committee today that the proposed settlement between Google and authors and publishers regarding the Google Books project should be approved. The Google Books settlement will make millions of titles available to the blind and other

Here are some more pics from the HPS Puerto Rico conference. Yeidyly sent them in for the newsletter, but I wanted to share them here too - especially since the newsletter is black and white and some of these pics just look so much better in color. Way to go Puerto Rico!!!!!

Check out the X-MEN! They came and talked to the kids about developing great self esteem - oohh la la....Yeidyly! You go girl!

Here's another tidbit of info I'm just passing along. MIND'S EYE: FREE PROGRAMS FOR PARTIALLY SIGHTED, BLIND, AND DEAF VISITORS Join Guggenheim Museum educators Georgia Krantz, Guthrie Nutter, and Ellen Edelman for a tour, discussion, and private reception. Separate programs are presented through Verbal Imaging, touch, and American Sign Language (ASL). *Mon, Oct 5, 6–8 pm Kandinsky Mon, Nov 9, 6–8 pm Contemporary art installations featuring Paired, Gold: Felix Gonzalez-Torres and Roni Horn , Intervals: Kitty Kraus , and Anish Kapoor: Memory Free, space is limited, advance RSVP required RSVP to the Oct 5 program by Mon, Sep 28: 212 360 4355 or access@guggenheim.org Learn more about Mind's Eye tours.*Priority admission to ASL tours is provided to the deaf community. ASL students will be notified two days before the program if space is available.Public programs are supported, in part, by public funds from the New York City Department of Cultural Affairs.

I don't know a lot about this - I'm just passing along the information for anyone who might be interested. The following will be offered in October. Please call me to register at (646) 312-1425 if you are interested in any of the following; or if you are a counselor, if you want to refer a client: Exploring Windows (prerequisite), 10/6, 1:30-4:30 Exploring Free Screen Readers, 10/21, 9:30-11:30 am Keyboarding, Saturdays, 10/26-12/5, 10 am – 12 Noon PowerPoint, Mondays/Wednesdays, 10/26-11/25, 5:30-8:30 pm Exploring NY JobZone, 10/28, 1:30-4:30 pm Windows Seminar (prerequisite), 10/29, 1:30-4:30 pm For more information, please see the CCVIP website http://www.baruch.cuny.edu/ccvip or call me at (646) 312-1425. Thanks for your support! Judith GerberOperations ManagerComputer Center for Visually Impaired PeopleBaruch College, CUNYphone: 646-312-1425 fax: 646-312-1421 http://www.baruch.cuny.edu/ccvip

Some of our researchers have expressed a special interested in seeing HPS'ers between the ages of 18 and 25 for the natural history study. Thus, this will be the priority group to go (for the first time or a repeat) to the NIH for the natural history study in the coming months. If you are an HPS'er between these ages, and you'd like to learn more about the NIH and the natural history study etc. - please call the HPS Network New York office - 1 800 789 9HPS. Donna can tell you more about the patients they're looking for and what would be involved.

A few days ago I got to the end of a bottle of study medication. I laughed because once again, there were only two pills in the bottom of the bottle. The bottles are counted out carefully, 180 capsules in each one – so by the time you taken all nine capsules for the day for several weeks, you should have an empty bottle. But I always have these two straggler capsules and have to get the third out of the next bottle, thereby making that bottle also off by one. When I had only been on the study a few weeks, I dropped one of the white capsules on my white kitchen floor. (It was definitely a low vision moment!) I remember this being such a crisis at the time. I looked for hours for that stupid capsule. I even tried to move the stove and fridge – but I never found it. I’m guessing there’s a petrified capsule down in the air duct maybe? I was so worried about it because if I didn’t find it, I was worried one of my God kids visiting would – or perhaps a visiting guide dog. Poison control woul

It's that time of year - time to start getting ready for the capital campaign. The capital campaign is a mailed appeal for donations to help meet the operational costs of running the Network. We form our mailing list from members, as well as names and addresses given to us by members. If you have addresses you'd like to add to the mailing list, please send them to: info@hpsnetwork.org . Please put capital campaign in the subject line so we don't get confused. Thanks so much!!!!

This week we added one new person to the HPS registry, thus we're now at 39 to go to meet the Hundred People Search challenge. Keep up the outreach!

I"m not sure how I got on the mailing list for this event, but man, I wish I could go. It sounds very cool. Since many readers are interested in topics concerning low vision/blindness etc. I thought perhaps someone would be interested. If you go, you HAVE to let me know about it. Dear Friends and Colleagues, If you have any questions about this event please contact the Metropolitan Museum of Art not CCVIP. Please pass this on. Thank you for your support. Lisa F. Saunders Marketing Assistant, CCVIP From: Gunther, Christena [ mailto:Christena.Gunther@metmuseum.org ] Subject: Art Beyond Sight: Multimodal Approaches to Learning International Conference at The Met Museum, Oct. 16 and 17 Time is running out to register for the Art Beyond Sight Conference on October 16 and 17 at The Metropolitan Museum of Art. Register today! Special student rates and student group rates are available. Art Beyond Sight: Multimodal Approaches to Learning An International Conference October 16 and 17,

This evening I was sitting at my favorite table at Homers – the one under the sound booth window. It has the most convenient electrical plug, and because it sits at an angle, the afternoon sun coming in from the western windows doesn’t bother me too much. As the sun set, one by one about 15 people showed up and settled in as a group on the sofas, some even sitting on the coffee table. They were all in their early 20s (from the sound of it – I couldn’t get a good look at them without staring too much.) They seemed to be from the same church group, and they seemed delightfully tight knit. They were planning the future of their group, and then, in I guess what was meant to be a lesson or a serious conversation their leader asked them, what is your spiritual gift. What has God given you, and how are you using it? There was utter silence. I thought they were probably afraid to be the one that spoke first, or maybe afraid they’d come off as arrogant if they so quickly were able to name what

My rehab counselor tells me that the check is in the mail for my new desk, and that the computer equipment has been ordered. Yahoo!!!! I think it will only be a couple of weeks before my office is finished and I’m up and running at full capacity! Yeah!

As many of you know, Karen T's husband was having surgery this week. Karen, who has HPS, says she always makes sure she has HPS brochures in her pocket book. When a student nurse and an instructor came to take care of her husband, Karen said she was in the process of barking at him about the need to get moving and get out of bed after surgery. "You should be a nurse," one of them joked. Karen replied that poor Tommy gets little sympathy from her - she's done this more than her fair share of times. That lead to a bedside conversation about HPS - sorry Tommy - and before she knew it, Karen was giving an impromptu lecture on Hermansky-Pudlak Syndrome to the student nurses on the floor. "I didn't even have my presentation in a bag," says Karen, "But I did have enough brochures for everyone in my purse, so I winged it." Way to go Karen!

Here are some pics from Yeidyly from the LULAC event in Puerto Rico. Bravo to the folks of HPS Network Puerto Rico for attending this event and working so hard to outreach!!!!

Here's a video clip, associated with the show that's going to air, about talking to kids about differences. It's pretty good. http://abcnews. go.com/video/ playerIndex? id=8575719

Below is updated information about the upcoming TV show on albinsm. Those of you very involved in the albinism community are likely already aware of this as it's been EVERYWHERE! But, just in case, I thought I'd pass this along. As far as we know, the show will not feature Hermansky-Pudlak Syndrome (HPS). It's a long story. I think the show will focus mainly on Tanzania with a few shots from some NOAH events. The situation in Tanzania is truly beyond horrible and needs the coverage, so I'm okay with it. I am hopeful, however, that many of you in the HPS community will use any online or family or friend conversations that result from this segment to discuss HPS. I know not everyone is comfortable with that, and there are some good reasons why - but on the other hand, if some of us are not vocal about HPS, no one will ever know. No one is going to advocate for us but us. ABC has decided to move the feature on albinism (including the segment about the murders in Tanzania)

I’ve been doing so well – very well in fact. My bowels have been behaving perfectly. Ulcers are healing up nicely. My breathing has been great (except when they mow the apartment complex.) Last night, however, wasn’t so great. I was up all night with an upset tummy and got to clean up several messes. Oh yeah. Got to love that! I don’t know what set it off as I hadn’t even eaten anything naughty. I had a peanut butter and jelly sandwich for dinner because I wasn’t very hungry. Peanut butter is what I usually eat to compensate for tummy troubles. My joints hurt all night too. I slept most of the day. Go figure.

Below is a press release from Intermune, the company that makes Pirfenidone. They have essentially reviewed the various clinical trials going on, and decided that Pirfenidone is safe and well tolerated. That would pretty much go along with what we've observed in the HPS community as well. We have a few folks that have been on the drug since the late 90s and continue to do well. Of course, as a journalist, I do have to say consider the source - but at the same time, as someone in a Pirfenidone trial, it's good to know. Results of Comprehensive Safety Analysis of pirfenidone In IPF Patients Presented At European Respiratory Meeting - Analysis shows safety and tolerability of pirfenidone across four clinical trials - VIENNA, Sept. 14 /PRNewswire-FirstCall/ -- InterMune, Inc. (Nasdaq: ITMN ) today announced that the results of a comprehensive review of safety data from four clinical studies were presented at the 2009 European Respiratory Society Annual Congress in Vienna, Austria