Living on the frontlines

One of these days when I get the newsletter finished, I really want to produce a cookbook for a fundraiser for HPS. As regular readers know, there's a recipe section on this blog. The idea is to collect recipes for the future cookbook. By putting them on the blog all of you, the readers, can act as our test kitchen to make sure all of the instructions are clear etc. for the recipes. The following recipe was submitted by Ana! Thanks Ana! Chinese Purple Cabbage Rolls with Apples 1 cup chopped shiitake mushrooms ¼ cup chopped fresh parsley ½ cup diced carrots ½ cup chopped zucchini ¼ cup chopped scallions 2 teaspoons tamaridash of freshly ground black pepper 5 tablespoons toasted sesame oil 1 cup cooked wild rice blend or medium grain rice 1 cup cooked adzuki beans ¼ cup sesame seeds 2 cups sliced apples ½ head or 10 leaves purple cabbage, steamed 3 to 4 minutes ½ cup chopped nuts Method In a large saucepan, sauté the mushrooms, parsley, carrots, zucchini, scallions, tamari, and peppe

Here's Lyra and her big brother helping her up. She's so funny. She'd get so impatient trying to get up on the jungle gym and before I could help her, big brother was on the scene!

I really enjoy taking pics - not that I'm a photographer or anything (although I'd love to take a photography class). I've been moving things over from my old computer to the new one and I'm down to the not-so-mission-critical stuff, my own pics. As I'm going through these pictures I'm finding some I just really like and I'm going to post them because, well, this is my blog and I'll post if I want to - he he he.....hope everyone will put up with me! This photo was taken at the Kansas City Renfest.

Janet posted to the HPS adults listserv yesterday. For those of you following her story, she’s officially off the oxygen, walking around as much as she pleases, and feeling great! Go Janet!!!!

I talked to Ryan while I was eating lunch yesterday. I think he’s getting bored. He was laying on Sara’s couch watching TV, and I think I woke him up. Harvey the cat is keeping him company and he’s off the prescription pain killers and now on Tylenol. But, he’s still keeping ice on the wound and says there’s still swelling and a lot of bruising. I’m anxious for his doctor’s appointment next week. I wonder if the swelling more than a week post operation is normal?

The following item was on the NOAH blog this morning. For readers who read this blog directly on my Website instead of on NOAH"s Website, I thought I would repost this for you. Our condolences to Mr. Moore's family. From the Desk of NOAH Dennis Moore, NOAH founding member, passes away at age 59. NOAH was saddened last week by the news of the death of one of the organization’s founding members. Dennis Moore, 59, of Fairless Hills, Pa., passed away on Tuesday, July 22, 2008. Mr. Moore, who is the father of NOAH co-founder Lee Laughlin, was one of a small group of people who met in Philadelphia in October of 1982 for a one-day albinism workshop. It was from a seed planted at that workshop and a dinner before it that NOAH grew into the world’s premier support organization for the albinism community. Mr. Moore had been in poor health as of late and was unable to attend NOAH’s 25th anniversary celebration in Philadelphia this past November. NOAH recognized Mr. Moore’s role as a foun

Don’t forget! Gretchen Golas, the nurse practitioner at the NIH that works with pediatric HPS’ers has joined the HPS families listserv for a week to field questions families might have about the NIH or raising a child with HPS. Do you have questions? Gretchen has answers, and if she can’t answer you we’ll help you find the answers. Although the Families listserv is mostly made up of parents of small children right now, it’s open to anyone who is a supporter/caretaker for someone with HPS. It’s a great place to stay up to date on what’s happening in the HPS Network as well as network with other families. If you’re not on the list but would like to join, e-mail hkdawn@yahoo.com . Just let me know who you are and what your HPS relationship is. Topics Gretchen has fielded so far: Ear piercing Treating nose bleeds Topics currently under discussion: Eye surgery Keeping young lungs healthy

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, but I think if you click on it you'll get a bigger image you can print out. It looks like fun!

Ahhh…wedding planning. Ryan and Sara have been hard at work planning their wedding. Ryan asked Matt to be his best man, and they’ve asked me to do some artwork for the wedding program etc. I’m thrilled to do it, but I’m a little rusty. I think I need to do some warm-up art first. Grin! It looks like the big day will be January 3rd, although Ryan and Sara have their first big meeting with the minister next week so it’s not in the bag until he signs off.

Here's another forgotten conference photo - this is your board hard at work on the day before conference starts. We had a bit of a delay midday when the hotel needed to get to a pipe that happened to be located above our meeting table. Not cool - we lost about an hour and now, here we are frantically trying to catch up.

I found a few pics from conference that I hadn't posted and this was one of them. It's Elsie sitting in the opening session. I love her haircut - hmm....wonder why? She looks like my twin!

It has happened again. Another person with albinism has been killed in Tanzania. His wife, who also has albinism, was injured and now their children with albinism are likely at risk. Every time I read one of these stories my heart breaks. I want to do something. Here's the story from the BBC. I also want to send a big kudos out to the BBC reporter covering this story. It's my understanding that the witchdoctors are now threatening her as well. Tanzania albinos targeted again Many albinos are living in fear of their lives Tanzanian police say another albino man has been murdered - the 26th victim in the country in under a year. The attackers reportedly severed the man's right foot and genitalia. His wife, also an albino, was also injured. Witchdoctors want the parts for potions they say make people rich, reports BBC correspondent Vicky Ntetema. In an undercover report last week, she was offered albino body parts by witchdoctors, who said their clients included police officer

Don't you just love those glasses? I wonder how my mom ever kept mine on! This is Lyra from the midwestern albinism picnic.

I posted something about this science camp to the blog back when they were taking applications. Although it's too late for this year, I thought I'd post the press release just to remind everyone that this is out there. It's a great opportunity - one that I never had growing up. And, even if you're not interested in the camp, these folks can be a great resource to problem-solve any vision issues that come up during math and science classes. 7/21/2008 FOR IMMEDIATE RELEASE CONTACT:Chris DanielsenPublic Relations Specialist National Federation of the Blind (410) 659-9314, extension 2330(410) 262-1281 cdanielsen@nfb.org National Federation of the Blind Holds Junior Science Academy Blind Children From Across the Country Will Discover Science In Accessible and Fun Ways Baltimore, Maryland (July 21, 2008): The National Federation of the Blind (NFB), the nation's leading advocate for blind children and their families, will be offering a Junior Science Academy targeting chil

Next week the HPS Families yahoo group will have a guest member, Gretchen Golas. Gretchen is the nurse practitioner that deals with pediatric HPS patients at the NIH. She’s coming on the list for a week to take questions from parents of children with Hermansky-Pudlak Syndrome (questions about related syndromes would also be welcome). The HPS Families yahoo group is for parents, friends or others who support people with HPS. Most of the list’s members are parents of young children at this time (but who knows what the future holds). This is a great chance for families that have never been able to go to the NIH, or who have never been able to attend a conference to learn some basics about HPS and have the chance to send questions to someone who actually sees cases of HPS (and other related syndromes) every day. If you’re not already on the HPS Families yahoo group, and you’re the parent, friend, supporter etc. of someone with HPS and you’d like to join us, please e-mail me at hkdawn@yahoo

I haven’t blogged about this because I wasn’t sure if Ryan was going to share it, but since he put it on the HPS Adults listserv, I know it’s okay. I’ve just been swamped. Yesterday Ryan had surgery to repair an intestinal hernia. The surgery went very well. He had almost no bleeding, didn’t require a platelet transfusion of any kind and was home the same day. Sara is keeping an eye on him. I just talked to him. He’s happily laying on Sara’s couch watching cable TV (he doesn’t have cable so that’s a treat) taking his pain pills and holding some ice on his wound site. I’m so glad it went so well. Even though I knew it was a very simple and routine surgery, I couldn’t help but worry. What can I say, I’m a mothering sort of sister and I wanted to be there in person to check everything out. Grin!

Lyra and her older brother scramble up the steps to play on the jungle gym.

Oh my, I forgot to update the blog on this last week! So far we’ve had five new HPS families found or diagnosed as a result of the Florida outreach efforts. That’s not counting the families that came to the outreach event that we’d lost because they’d moved and not updated their contact information. That’s not bad. We’re now at 88 on the 100 People Search, and there are a number of families currently testing. Good work Florida!

Recently we had a picnic for people with albinism in the greater Kansas City area. I got cab stranded and so got there rather late so I didn't really get to know everyone. But I do know Lyra's family. They've organized bowl-a-thons for NOAH and I show up to offer my support. Lyra doesn't have HPS, but as silly as this may seem, I do love pics of little kids with albinism. It's like looking at your own past. And Lyra is a blast to watch. There was this big jungle-gym thing at the park, and Lyra was fearless climbing all over the thing! I'll probably be posting many more pics of her from that day - I took tons!

This is just a cute picture of a kitten at Jessica's farm.

The BBC is on top of the story regarding the horrible killings of people with albinism in Tanzania. I know many of you have been interested in following this story and are looking for ways to help. Although I couldn't make it to NOAH, it's my understanding that some help is being organized. The HPS Network has expressed to the organizing group that many of our members would like to do something too. We know what it's like to have to fight for your life because you have albinism. Thank God, however, we aren't being chased for our body parts. I can't even imagine living like this. It's just heart breaking. As soon as I know anything about what anyone can do to help, I'll pass it along. Living in fear: Tanzania's albinos Twenty-five people with albinism have been murdered in Tanzania since March, a BBC investigation has found. Albinos are targeted for body parts that are used in witchcraft, and killings continue despite government efforts to stamp out the g

We had big news this weekend. As regular blog readers know, Ryan’s heart has been captured by a girl from Virginia named Sara. Grin! On Friday night, Ryan took Sara on a dinner boat cruise, and as the boat turned around and the Washington Memorial was in the background, Ryan took Sara to the front of the boat, got down on one knee, and asked Sara to marry him. She said yes! Our family couldn’t be happier. I’ve only seen Sara on a few occasions, but she seems very nice and down to earth. She strikes me as the kind of person who always wants to help out and really tries to understand the perspective and reality of the people around her. That’s a skill that is rarer than you might think. Sara is also up to speed on HPS. She’s been able to distinguish between the future of HPS and the past. That is another rarity in the dating world. I know I’m bias, but I think Ryan will make a great husband. He’s “well trained” having grown up in a house of girls. The poor guy has been subjected to ever

A big kudos to the gang in Massachusetts for their efforts this past weekend to get the word out about Hermansky-Pudlak Syndrome. They braved the heat and humidity (and it was a scorcher) to attend the Puerto Rican Festival in Holyoke, Mass. They manned a table and passed out information about HPS to those going by. A special thanks to the festival’s organizers who were nice enough to move the HPS table to a shady spot without even being asked! That was very thoughtful and I know it was appreciated.

The following article appeared on the Web site of Inside Higher Ed. I thought it was a great article, and the comments (even the ones I didn't agree with) were at least engaging at the end. Obviously, I'm all for funding NIH because my life depends on their research. But, besides that, in the midst of our current economic situation (and if you don't think it's bad you're head has been buried in the sand too long) the one thing we can do to ensure our future is to fund the one thing no one can outsource or take away from us - our country's brain power and knack for innovation. If we invest in science, we're going to have advances that will help us stay healthy as a nation. Sure, eventually those discoveries will be copied, but in the meantime, we'll be leading the way. I'd rather be the copied than the copier - you can't charge royalties etc. in the second case. Anyway, here's the article. You'll have to click through to the Web site to re

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 Rican Day Parade, helped dozens of people connect with the NIH for research-oriented treatment, hosted the New York conference, hosted a major outreach effort in Florida and attended NOAH as an outreach. We accomplished a LOT! We have a lot to accomplish as we finish the summer and move into the fall. Among the items on the list – the annual Puerto Rico outreach and a number of additional medical meetings just to name a few things. But, nothing is for free in this life. Sending packets of information to new families and doctors takes money. Printing brochures takes money. Maintaining the 1 (800) number at the office takes money. Running the computers and our server takes money. Making copie

This week has been a tough one from the fatigue point of view. I’ve been taking my daytime medicine and trying to use the CPAP at night, but I find myself waking up six to seven times a night needing to go to the bathroom for varying reasons. Or, I’ll wake up because a neighbor has turned their car on in the parking lot and shined their bights in my window – or the neighbor’s gaggle of dogs is out again barking and howling. Usually I can sleep through these things so I must not be getting any deep sleep. My joints have also been more achy than normal this week, and I don’t know why. My GI is fine (except for some extra gas that gets me up at night). I don’t know what that’s about, but my fingers and wrists have been especially bothersome – a crisis for a net addict like myself. I haven’t been online as much partly because mom is here, but partly because typing hurts. Mom thinks my fatigue is because I go to bed too late. What she doesn’t understand, being the bright-eyed morning person

The following article appeared on the Coalition for Pulmonary Fibrosis Web site. I thought it was a very nice summary of some of the major developments in pulmonary fibrosis research in the last year as well as what's on the horizon in the next year or two. Sometimes it amazes me how far we've come just in the six years since I learned I had HPS. CPF Chairman Marvin Schwarz, MD Discusses IPF Research with BioWorld Today Reporter Rare Pulmonary Fibrosis may Have Blockbuster Potential By Catherine Hollingsworth, BioWorld Today A handful of companies are working to develop a treatment for a rare lung disorder called pulmonary fibrosis that, by some estimates, could present a $500 million to $1.5 billion market opportunity. "It is probably a commercially significant market," said Michael Gilman, CEO of Stromedix Inc., whose company has a compound for pulmonary fibrosis in Phase I. Aside from the sales potential, a drug targeting the fatal lung-scarring condition also woul

The following is a press release that came from the American Thoracic Society. It involves two issues of importance to us. First, without this action the amount of payment doctors recieved from treating patients on Medicare would have been cut. Trust me - it isn't the docs getting rich off of Medicare patients. And to penalize them for treating Medicare patients by not paying market rates would mean that Medicare patients would find it harder and harder to find a doctor willing to take them on. For us, throw in an ultra rare syndrome (thus more time consuming) and this would have been a problem for many of those with HPS. The second issue has to do with pulmonary rehabilitation. By getting Medicare to cover pulmonary rehabilitation, hopefully other insurers will join in as well. The benefits are real from what I've seen first hand. It's an issue the HPS Network has worked on with the ATS in the past so it's another victory for the year. American Thoracic Society Applaud

For the blog readers that aren’t on the HPS Adults yahoo group, I know some of you have been following Janet’s story. Janet is doing well. She told me last night she walked more than an hour yesterday and she continues to be trying to wean off the oxygen. She’s in great spirits and was calling me because she’s so anxious to help with an HPS fundraiser or event that she wants to start now and she wants to know where her extra brochures are at. Grin! You go girl!

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 time. They end up being presents and then this year I donated a few eggs to the HPS Network Craft Bank and they were sold at conference with the funds benefiting the HPS Network. The egg is made of paper mache (you can buy them already made at the craft store). I then put a sealer on the egg so the paint doesn't soak through the paper too much. Then I paint the egg. When it's dry, I put several coats of varnish over it and attach a little dodaddy thing to the top so it can hang as an ornament. I'll be doing some of these again for the HPS Network. Actually, I have one that is a larger size than this one about half finished now.

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 the protection of their advertisers they shut down the account. I’m having mixed feelings about the letter. On the one hand I totally understand where they are coming from. I have also been a google ad advertiser and you certainly don’t want to pay for bogus clicks. On the other hand, it’s irritating that the system punishes the publisher for something I have no control over. It’s not like I’m sitting here clicking over and over and over. Many people know that I donate the revenues from my google ad to the HPS Network. I’ve never been out to make a buck off of HPS. Trust me, it drains my wallet far more than it has ever added to it. Grin! It could be that someone was thinking they were he

Here's a pic of a barn cat at Jessica's. He's so cute!

My mom is visiting me right now. So far it’s been a good visit. Yesterday we went to see the new expansion of the Nielson-Atkins Museum of Art. It’s been open for quite a while, but I’ve never had anyone that wanted to go. My mom was an art major for her undergraduate work and knows a lot about art history, so she’s fun to go to museums with because she can often tell you a lot about the artists etc. I really liked the new section. The first part was a lot of modern art and pop art. That isn’t so much my taste. But the second part had a wonderful photography exhibit. It talked about the history of photography and how the different methods worked and developed over the years. Then they had a section of artwork that people had done with digital photography. It was so cool! There was one in particular that I found fascinating. I wish I had written down the name of the artist. He took his digital camera and took pictures of trees staring straight up at them into the branches. The photos we

I'm working on the HPS Newsletter and was trying to find an image of the signing of GINA by President Bush. I found this one on the White House Web site, although the resolution is crappy and they don't make high res pics available, not even in the media section. I have to say, the Clinton administration had a much better online media room - but that's a story for another day. I saved this pic, and then I had a wacky Friday thought. I looked around at all the piles of paper, all the things to do, sitting around on my desk at work. And then I looked at this picture - note how clean the President's desk is! There's nothing on it! It's spotless!!! Do you suppose some secretary comes by before the photographer shows up and clears it off for him? Or do you think it's always that spotless? I'd like to think that it's usually covered in work like my desk.

Grandma and Aunt Phyllis enjoy talking at Jesse's farm on the 4th of July.

I haven’t posted a health update in a while because there hasn’t been much to say – I’ve been doing great. But this week I feel like something is off. I’ve been so tired all week, even with the CPAP and the medicine to help me stay awake during the day. Yesterday there was definitely something not right. When I woke up my joints were hurting, and they haven’t bugged me much in a while. But they weren’t just achy and stiff from the night – they actually were hurting, although not really, really badly. Just enough to be annoying. It was my ankles, wrists and fingers again. As I got out of bed I felt groggy, as if I’d been drugged. My legs felt like jell-o. I seemed to be dragging getting ready for work and feeling a bit spacey in the head. I’d been up most of the night going to the bathroom, so I chalked it up to not getting enough sleep. When I got to the bus stop, however, I felt worse. Suddenly standing there I felt dizzy and was sweating head to toe. I felt as though I might pass out

This is my cousin Danny's son Hunter playing frisbie at Jessica's (Danny's sister, my cousin) farm on the Fourth of July.

I thought this picture of my grandma turned out well. She's 91 years old tomorow! Happy Birthday Granda!!!!

The following article ran on the ABC News site. I encourage you to click through. The first part is about Rick and his photography, but it also talks about the upcoming NOAH meeting and efforts underway to help the people with albinism in Africa. That's something I'd like to help with if at all possible. Having HPS makes albinism much more than a matter of vision or appearance for me - but I can't imagine being hunted down like an animal for your body parts. I can't even get my head around it. I was pleased, however, to at least see a link on the side to the story about HPS that ran on the AP. It would be nice if we got mentioned now and then as a part of the albinism community though and not something "separate." But that's okay. I thought the article was very good. Fighting the Stigma of Albinism Stereotypes Prompt a New Push to Empower People Traditionally Known as Albinos By SUSAN DONALDSON JAMESJuly, 9, 2008 It was at the corner of Park Avenue and 20t

Debbie is one of the HPS'ers that worked so hard to organize the recent HPS Florida conference. And when mom is organizing an HPS event, you can bet the rest of the family joins in too. Here's a pic of Debbie's daughters. They're both such sweethearts!

This is my cousin Jessica's little boy. Don't you know he'll just love that headline when he's 15!

The Vision of Tomorrow is a foundation that works to fund albinism research as well as support the albinism and low vision community in other ways. They've been a supporter of the HPS Network, for example. They have an upcoming family event/fundraiser in the Chicago area. It sounds like a lot of fun! Here's the e-mail I was sent yesterday. Dear Friends: As many of you know, we are the founders of the Vision for Tomorrow Foundation. Our daughter, Tess, is visually impaired. We started this foundation to better the lives of those with low vision through research, education and public awareness. Attached is the invitation to our first big event! This is a 2-day event – August 23rd and 24th. There will be a 3-on-3 basketball tournament (Saturday all day and Sunday morning) and a Family Carnival (Sunday 1-4 p.m.) There are a lot of details but please note the following: Tournament players will be bracketed with appropriate age groups and 6-8th graders will ONLY play on Sunday. Tourn

Who cares about HPS - we want to eat!

Come help us get the word out about HPS! The HPS Network will be participating in the Puerto Rican Festival in Holyoke, MA from July 17 - 19. The evening of July 17th we'll have an informational table and then on July 19 we'll be marching in a mile-long parade. Anyone wanting to help support HPS awareness is welcome! You don't have to be Puerto Rican and you don't have to have HPS. Carman Camacho is spearheading this event. She's on both listservs so if you want to contact her you can post there or contact me and I'll forward the information along! hkdawn@yahoo.com .

This article appeared in the Bee. I don't know if any of the readers are eligible, but given how much some of our families pay in health care, I thought every little bit could help. Housing cash available for older, disabled, blind By J.N. SBRANTI jnsbranti@modbee.com last updated: July 07, 2008 03:49:01 AM At A Glance To get California Homeowner and Renter Assistance Program funds, residents must apply. The 2008 application deadline is Oct. 15. Here's who is eligible: Must be 62 years of age or older, blind or disabled as of Dec. 31, 2007 Must have a total household income of $44,096 or less Must be a U.S. citizen or legal resident For homeowners assistance: Must have owned and lived in your own home at the end of 2007. One-time payments of as much as $472.60 will be awarded, based on how much is paid in property taxes. For renters assistance: Must have paid $50 per month or more in rent for a California residence that is not tax-exempt. One-time payments of as much as $347.50

Just passing this along as the awards, as well as the award's namesake, might be of interest to readers. 7/5/2008 FOR IMMEDIATE RELEASE CONTACT:Christopher Danielsen Public Relations National Federation of the Blind(410) 659-9314, extension 2330(410) 262-1281(Cell) cdanielsen@nfb.org National Federation of the Blind Awards $100,000 First-ever Dr. Jacob Bolotin Awards Presented at 2008 Convention Baltimore, Maryland (July 7, 2008): The National Federation of the Blind presented $100,000 in cash awards to individuals and organizations that have made outstanding contributions toward achieving the full integration of the blind into society on a basis of equality. The first-ever Dr. Jacob Bolotin Awards honored ten innovators in the blindness field at the National Federation of the Blind’s annual convention in Dallas on Friday, July 4. Awards in the amount of $30,000 were given to Dr. George Kerscher and collectively, BLIND, Inc., the Colorado Center for the Blind, and the Louisiana Cen

Organizers of the Florida HPS Outreach recruited family and friends to cook for the event to keep costs down. I heard the food was AWESOME! Here it is lined up in the church kitchen. Thanks for the pics Debbie.

These are the children of two of my cousins. I had a ball watching them play outside and taking lots of pictures! Poor blog readers, you're going to be subjected to a lot of these pictures for the next few weeks. Evil Grin!

Are you going to the NOAH meeting? If so, keep your eyes open for the HPS Network and stop by our table to say hello!

After a long week of HPS outreach, the Appells along with some HPS friends, took a well deserved break and went to Disney! Here's Donna, Ashley, a princess, and Richie. Richard didn't go to Florida. Oh how I wish I'd been there!

Even though this is my personal blog, and not an "official blog" of the HPS Network, I intentionally don't blog about politics unless it relates to HPS. The reason is I don't want to do anything that would cause division in a community that needs to remain united to promote the cure. Someday, perhaps when we can post daily news to the HPS Website its self, I'll reclaim more of the personal nature of my own blog. That being said, we all have our pet peeve issues. Mine happens to be funding for scientific research, medical related and beyond. The reality is some of the most bleeding edge discoveries are difficult to fund in the open market. Not investing in scientific discovery is so short sighed when it comes to the long term health of our economy. We have global competition and this is the information age. Being able to produce widgets is short term. Sooner or later someone will make widgets cheaper than we can, no matter what the widget happens to be. But innovat

I'm ready to jump up and down! Janet is HOME!!!!!!!!

National Federation of the Blind to Convene Historic Quiet Car Panel in Dallas 6/26/2008 FOR IMMEDIATE RELEASE CONTACT:Chris Danielsen Public Relations Specialist National Federation of the Blind(410) 659-9314, extension 2330(410) 262-1281(Cell) cdanielsen@nfb.org MEDIA ADVISORY National Federation of the Blind to Convene Historic Quiet Car Panel in Dallas Member of Congress, Leading Automobile Industry Representatives to Address Nearly Three Thousand Blind Americans The National Federation of the Blind announced today that a major portion of the agenda of its upcoming national convention will be dedicated to solving the problems posed to blind pedestrians by silent vehicle technology. On the afternoon of Wednesday, July 2–the opening day of the National Federation of the Blind convention in Dallas, Texas–leading representatives of the automobile industry as well as United States Congressman Ed Towns of New York, the sponsor of the Pedestrian Safety Enhancement Act of 2008 (H.R. 5734)

3,000 Blind People Arrive in Dallas 6/26/2008 FOR IMMEDIATE RELEASE CONTACT:Chris Danielsen Public Relations Specialist National Federation of the Blind( 410) 659-9314, extension 2330 Cell: (410) 262-1281 E-mail: cdanielsen@nfb.org MEDIA ADVISORY 3,000 Blind People Arrive in Dallas Expected to be Largest Disability Conference This Year Event: National Federation of the Blind Annual Convention Dates: June 29–July 5, 2008 Place: Hilton Anatole Hotel 2201 Stemmons Freeway Dallas, Texas 75207 (214) 761-7500 Attention Editors: Congressman Pete Sessions to Participate in Second Annual March for Independence At 7:00 a.m. on Wednesday, July 2, over one thousand blind people will gather in Dallas for the second annual March for Independence—A Walk for Opportunity. The March for Independence is a 5K march demonstrating the independent spirit of the nation's organized blind, their friends, family, and supporters. The honorary chair of the March is Congressman Pete Sessions (TX-32), who will b