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Living on the Frontlines

June 2008 - Posts

  • Another one of the unsung HPS soldiers

    Pictured above is Richie looking a bit worn out. It’s no wonder. Richie is another one of those unsung soldiers in the war to cure HPS. He’s Ashley’s older brother.

    Richie is the nicest guy you could ever want to meet. He’s helped out with HPS projects, probably every since he can really remember. He’s hauled boxes, unloaded trucks, answered phones, babysat and on this most recent Florida outreach, been a driver for the outreach team. Richie has also often made donations to the cause out of his own funds, and hey, when you’re a kid, and then a college student as Richie is now, those funds are hard to come by!

    So, a big kudos and thank you to Richie who has always been there for those of us with HPS.
    Thanks Debbie for the pic!
  • Janet continues to make progress

    I spoke with Janet earlier today. She’s getting anxious. Every day they seem to say that she’s getting out of the hospital, and every day it’s one more day. She’s hoping today will be the big day. Janet sounded great! She’s down to one liter of oxygen at rest, but it may take as long as a month to completely get her off the oxygen.
  • Yes, we are winning!

    Here's Donna at what I guess is the end of her talk. Note the slide says "We are winning." She's right. This is an exciting time in Hermansky-Pudlak Syndrome research. We're learning so much and we are making headway.
  • Outreach in Florida

    The outreach in Florida was definately a success. I'm still waiting on all of the information to be processed to see how many new people we found. But, we were also able to reach some folks we knew already, but who had not been able to attend an HPS conference. Here Donna is giving her history of the Network, I'm guessing, because that's Ashley's baby picture on the screen! Thanks to Debbie who sent this pic from her cell phone camera.
  • Another picture of Ryan and Sara

    Just a few more days before Ryan and Sara are in Kansas!
  • What's the air like where you live?

    While on the American Lung Association Web site, I found the following release. It came out in May, and I meant to look it up then, but sort of forgot about it. At any rate, as many of us have trouble with air quality and breathing, I thought some of you might be interested. Wouldn't you know Washington D.C. was not exactly the best place. Oh well.....I whined to myself....but they have a metro. Waaahhhhh....

    National Trends Show that Declines in Ozone and Particle Pollution Have Stalled

    Contact: Carrie Martin(202) 715-3461
    Editor’s Notes: American Lung Association subject matter experts available for interviews— Bernadette Toomey, President and CEO; Dr. Norman H. Edelman, M.D., Chief Medical Officer; and Janice Nolen, Assistant Vice President, National Policy and Advocacy. Online maps pin-pointing cleanest and most-polluted cities available at

    WASHINGTON, D.C., May 1, 2008—The American Lung Association issued its annual report card on air pollution today, ranking cities most affected by three types of pollution: short-term particle pollution, year-round particle pollution and ozone pollution. For the first time ever, a city outside California, Pittsburgh, Pennsylvania, tops one of the most polluted lists in the ninth consecutive American Lung Association State of the Air report.

    Pittsburgh moved to the top of the list of cities most polluted by short-term levels of particle pollution, a deadly cocktail of ash, soot, diesel exhaust, chemicals, metals and aerosols that can spike dangerously for hours to weeks on end. The body’s natural defenses, coughing and sneezing, fail to keep these microscopic particles from burrowing deep within the lungs, triggering serious problems such as breathing, asthma and heart attacks, strokes, lung cancer and even early death. Pittsburgh also ranks second on the list of cities with the most year-round particle pollution while Los Angeles again claims the first spot this year.

    Los Angeles, despite being ranked atop two of the three most-polluted lists, saw continued improvements in air quality, dropping its year-round particle pollution levels by nearly one-third during the last decade, and saw solid improvement in levels of ozone or “smog,” a gas formed most often when sunlight reacts with vapors emitted when motor vehicles, factories, power plants and other sources burn fuel. Ozone irritates the respiratory tract and causes health problems like asthma attacks, coughing, wheezing, chest pain and even premature death.

    “The air quality in several cities has improved, but in others, declines in pollution have stalled. The trends tell us loud and clear that we need to do more to protect Americans from breathing air that’s simply hazardous to their health,” said Bernadette Toomey, President and Chief Executive Officer, American Lung Association. “We applaud the aggressive efforts of Los Angeles to control particle pollution. It’s proof that making a commitment to clean up pays off.”

    Several cities across the country lost footing and slipped closer to the top of the list of most ozone-polluted cities, including San Diego, Atlanta, Charlotte and the Baltimore-Washington, D.C. metro area. Birmingham, Alabama, joined the list for the very first time, ranking at number 22 of most ozone-polluted cities, while the five worst cities on this list actually saw modest improvements. Fresno, California, for example, experienced a remarkable decline in the number of high ozone days since its peak in 2001-2003.

    Due to the lead time for the State of the Air report, the American Lung Association used the U.S. Environmental Protection Agency’s (EPA) 1997 standard for ozone levels rather than the new tighter standard announced on March 12, 2008.

    “If we were to measure the number of unhealthy days against the new ozone standard, it would show that ozone pollution is worse than the report indicates,” said Ms. Toomey. “Even with these stricter ozone standards, Americans are being denied the health protection they deserve under the Clean Air Act.”

    National trends: declines in ozone and particle pollution have stalled.
    New this year, the State of the Air report provides online charts showing the trends in ozone and year-round particle pollution in each of the 25 most polluted cities. The ozone charts cover data from 1996 to 2006, while the year-round particle pollution charts show trends from 2000-2006. In addition, the report incorporates the EPA analyses of ozone trend data from 1990 to 2006 and particle pollution trend data for 2000-2006. The State of the Air trend charts and the EPA analyses confirm that air pollution levels dropped in the early years of this century, but have leveled off in the last three years, particularly when controlled for weather.

    Other Key Findings of State of the Air 2008:
    One in 10 people in the U.S. live in areas with unhealthful levels of all three types of pollution: ozone, short-term and year-round particle pollution.

    Two of five people in the U.S live in counties that have un­healthful levels of either ozone or particle pollution.

    Nearly one-third of the U.S. population lives in areas with unhealthful levels of ozone.

    Over one quarter of the people in the U.S. live in an area with unhealthful short-term levels of particle pollution.

    One in six people in the U.S. live in an area with unhealthful year-round levels of particle pollution.

    The cities identified in the lists below most often include the respective metropolitan areas.

    Top Ten U.S. Cities Most Polluted by Short-Term Particle Pollution: 1) Pittsburgh, Pa.; 2) Los Angeles/Long Beach/Riverside, Calif.; 3) Fresno/Madera, Calif.; 4) Bakersfield, Calif.; 5) Birmingham, Ala.; 6) Logan, Utah 7) Salt Lake City, Utah ; 8) Sacramento, Calif.; 9) Detroit, Mich.; 10) Baltimore, Md./Washington, D.C./Northern Virginia.
    Top Ten U.S. Cities Most Polluted by Year-Round Particle Pollution: 1) Los Angeles/Long Beach/Riverside, Calif.; 2) Pittsburgh, Pa.; 3) Bakersfield, Calif.; 4) Birmingham, Ala.; 5) Visalia/Porterville, Calif.; 6) Atlanta, Ga.; 7) Cincinnati, Ohio; 8) Fresno/Madera, Calif. 9) Hanford/Corcoran, Calif.; 10) Detroit, Mich.

    Top Ten U.S. Cities Most Polluted by Ozone: 1) Los Angeles/Long Beach/Riverside, Calif.; 2) Bakersfield, Calif.; 3) Visalia/Porterville, Calif.; 4) Houston, Texas; 5) Fresno/Madera, Calif. 6) Sacramento, Calif. 7) Dallas-Fort Worth, Texas; 8) New York, N.Y./Newark, N.J.; 9) Baltimore, Md./Washington, D.C./Northern Virginia; 10) Baton Rouge, La.

    To see what grade (A to F) your community’s air quality earned, visit the American Lung Association website at Tips are also available on how to protect yourself and your family from air pollution.
    About the American Lung Association: Beginning our second century, the American Lung Association is the leading organization working to prevent lung disease and promote lung health. Lung disease death rates continue to increase while other leading causes of death have declined. The American Lung Association funds vital research on the causes of and treatments for lung disease. With the generous support of the public, the American Lung Association is “Improving life, one breath at a time.” For more information about the American Lung Association or to support the work it does, call 1-800-LUNG-USA (1-800-586-4872) or log on to
  • Bye-bye tubes – Janet update

    I talked to Janet over lunch. She’s doing much better. The fluid that was building up around her new transplanted lung seems to be almost gone. They are hoping to take the tube out today. She said she’s been walking around the hospital and feeling better. They have started to taper the oxygen again now that there isn’t so much fluid.

    Janet wants out of the hospital. She’s been a trooper. She’s been patient. But she’s climbing the walls – she wants OUT!

    Hopefully that will happen this weekend. Fingers crossed!
  • Oxygen on airplanes

    Making it easier for people requiring oxygen to travel on airplanes has been another advocacy issue for the HPS Network. It's something we've advocated for on Capitol Hill with the American Thoracic Society.

    Currently it can be a real pain to travel if you reuqire oxygen. Some airlines flat out won't allow it. Others will, but they won't let you bring your own and they charge you a nice little fee for the right to breathe on their planes. They don't always provide oxygen for flight changes, delays or cancellations. The patient has to pay for and arrange all of this. It's no picnic.

    It seems that Canada has seen the issue as one of access for the disabled. (This is something I'd like the revamped ADA to cover.) They've announced steps that are ahead of the U.S. This is great for Canada, and it's great for us. We can now point to Canada as an example to show it can work and not be dangerous. Here's the press release from the Canadian Department of Transportation.

    Canadian Transportation Agency Decision on use of Medical Oxygen by Air Travellers

    OTTAWA - June 26, 2008 - The Canadian Transportation Agency issued a final Decision today which outlined undue obstacles to the mobility of air travellers with disabilities who require medical oxygen and ordered a series of corrective measures to be taken by Air Canada.

    This Decision No. 336-AT-A-2008 follows the 2005 interim Decision where the Agency determined the existence of obstacles but did not have enough evidence to rule whether the obstacles were undue. The Agency decided to pursue its investigation through a public hearing held in 2007 in order to gather more information and explore possible corrective measures or alternatives to remove any undue obstacles as necessary.

    WestJet allows passenger-supplied gaseous oxygen on domestic flights but not on transborder or international flights which meant that, in 2005, passengers requiring medical oxygen could not travel on these flights. The Agency found this to be a significant obstacle to these persons with disabilities at that time. Since then, WestJet has removed the obstacle voluntarily by amending its policies to allow the use of passenger-supplied portable oxygen concentrators (POCs), an approved and widely accepted new technology, on all its flights. As a result, the Agency found that no further action is required of WestJet.

    Air Canada does not allow passenger-supplied gaseous oxygen, but provides its own gaseous oxygen service to passengers for a fee on all of its flights. In 2005, the Agency found there were systemic obstacles with this service. Since February 2008, Air Canada has also allowed the use of passenger-supplied POCs on its domestic, transborder and some international flights.

    In today's Decision, the Agency ruled that passenger-supplied oxygen, in whatever form is permitted by safety and security regulations, is the most appropriate accommodation for persons with disabilities who require oxygen to travel by air with Air Canada and WestJet; specifically, passenger-supplied gaseous oxygen and POCs on domestic air services and passenger-supplied POCs on international air services. However, should Air Canada choose to continue to provide a gaseous oxygen service rather than allow passenger-supplied gaseous oxygen, the Agency is willing to accept Air Canada's service as providing a reasonable alternative to passenger-supplied gaseous oxygen on its domestic air services on the condition that it implements the Decision's corrective measures.

    Air Canada must implement corrective measures within specified time frames but all must be completed within a one year period from the date of this Decision. Some of the key corrective measures include:

    modifying its Fitness for Travel form to seek only information on the person's oxygen-related needs;

    providing a continuous carrier-supplied oxygen service from the point of check-in, during connections and until arrival in the general public area at the final destination; and,

    providing its carrier-supplied oxygen service free of charge on board the aircraft and within terminals, except for the cost of the oxygen itself and any non reuseable pieces of equipment.

    Where passenger-supplied POCs are permitted by foreign regulatory regimes but Air Canada does not yet allow their use, Air Canada must continue to provide its carrier-supplied gaseous oxygen service consistent with the Decision's corrective measures.

    This Decision continues to ensure equal access to the federal transportation network for persons with disabilities, regardless of the nature of the disability.

    The Canadian Transportation Agency is an independent tribunal which operates like a court to render decisions on a case-by-case basis. The Agency's jurisdiction with respect to persons with disabilities, stated in Part V of the Canada Transportation Act, is to ensure that persons with disabilities have proper access to effective transportation service. The Agency makes decisions and orders to eliminate undue obstacles to the mobility of persons with disabilities in the federal transportation network.


    Backgrounders on the Agency's Decision No. 336-AT-A-2008 on oxygen may be found in the Media Room at The Decision No. 720-AT-A-2005 issued December 13, 2005, and related news release may also be found on the Agency's Web site.

    For further information, please contact:

    News Media Enquiries: Jadrino Huot at 819-953-9957
    General Public Enquiries:; 1-888-222-2592;
    TTY: 1-800-669-5575 (Canada only)

    To keep up-to-date with our latest news releases and other information, subscribe to our electronic mail service.

  • Pulmonary Rehabilitation gets a boost by the House

    The following is a press release from the American Lung Association. I wanted to give a little background first. The HPS Network, in cooperation with the American Thoracic Society, has lobbied for pulmonary rehabilitation to be covered by Medicare. Many insurance plans don't cover pulmonary rehabilitation, although many HPS'ers and other patients with pulmonary fibrosis, find it useful. Insurance companies tend to follow the lead of Medicare, so it's the hope that this bill will make it easier for patients with pulmonary fibrosis to get pulmonary rehabilitation covered. I know the release talks about COPD, but it really goes beyond that.

    I must admit, personally, when I read the ALA's smoking info. I have mixed feelings about it. On the one hand there's no doubt that smoking causes all kinds of health problems and really costs the United States a lot of money annually. I'm happy to see the advocacy for smoke free zones as I'm the person that calls in advance sometimes to make sure a restaurant or bar is smoke free. The smoke really irritates my breathing.

    On the other hand, it's a public relations challenge. The public has a perception that those of us with lung disease "did it to ourselves." Lung diseases don't even begin to get the research dollars that other organ systems get. I've had several HPS'ers on oxygen tell me that they've overheard comments from strangers as they go about their business along the lines of "that's what happens when you smoke..." It would be a rude comment either way, but it's especially hurtful when you're relatively young and just falling subject to your genes.

    Lung diseases need research dollars because people are dying - period.

    Putting away the soap box for a minute:

    American Lung Association Commends U.S. House of Representatives for Passage of Pulmonary and Cardiac Rehabilitation Act

    Contact: Gregg Tubbs202) 715-3469 202) 365-2694 (cell)

    Washington, D.C., (June 24, 2008) – The American Lung Association commends and thanks the U.S. House of Representatives for its passage of the Pulmonary and Cardiac Rehabilitation Act today. As part of the overarching Medicare Improvements for Patients and Providers Act of 2008, the Pulmonary and Cardiac Rehabilitation Act is a critical measure that will make life easier for millions of Americans who suffer from serious lung disease, including many older, Medicare-eligible adults who suffer from chronic obstructive pulmonary disease (COPD). The Lung Association now calls on the Senate to pass this legislation so it can begin working for the millions of Americans in need.

    “We applaud Chairman Dingell, Chairman Rangel and Senate Finance Committee Chairman Max Baucus for their leadership on behalf of this legislation,” said Bernadette A. Toomey, President and CEO of the American Lung Association. “Passage of this bill, which will help millions of Americans suffering from lung disease, has been a priority for the American Lung Association for several years.”

    COPD, which includes emphysema and chronic bronchitis, is the fourth-ranking cause of death in this country. As of 2004, 11.4 million U.S. adults were diagnosed with COPD and an additional 12 million were believed to have the disease but were not yet clinically diagnosed. Each year, COPD claims the lives of an estimated 120,000 Americans.
    This legislation will create a national coverage policy for pulmonary rehabilitation so that Medicare beneficiaries in all states will have access to this cost-effective treatment. Importantly, this legislation will also end long-standing confusion among providers, the Centers for Medicare and Medicaid Services, and various reimbursement agencies, as to whether pulmonary rehabilitation is a covered benefit.

    Pulmonary rehabilitation helps reduce the impact of COPD by helping to control or reduce breathlessness and recondition the body. With this comprehensive, multi-disciplinary approach which includes exercise, education and breathing retraining, people with COPD can experience great benefits, including less need for medications, fewer hospital stays, longer survival and a better quality of life.

    About the American Lung Association: Beginning our second century, the American Lung Association is the leading organization working to prevent lung disease and promote lung health. Lung disease death rates continue to increase while other leading causes of death have declined. The American Lung Association funds vital research on the causes of and treatments for lung disease. With the generous support of the public, the American Lung Association is “Improving life, one breath at a time.” For more information about the American Lung Association or to support the work it does, call 1-800-LUNG-USA (1-800-586-4872) or log on to
  • Move to revamp ADA moves to the Senate

    Here's an update from the New York Times on the move to revamp, and hopefully improve, the Americans With Disabilities Act. I personally have mixed feelings about this. But, I must add that with everything going on in HPSland I haven't had time to adequately research this.

    My concern is this: if we expand the definition of the disabled in this way, does that then make them eligible for programs designed to encourage employers to hire the disabled. And, if so, how? Here's the scenario I'm worried about.

    Let's say there are two applicants for a job. Both apply under a program designed to encourage employment of the disabled. One has, say, an illness that is currently controlled by medication and not easily visible to the employer. The other is, lets say, blind. The employer is going to get "credit" for being a good employer and hiring someone with a disability either way. One person requires no adaptations, no money spent to make anything accessible etc. The other will. Would the employer find it easier to get around any misconceptions they might have about the blind person because they're hiring the other disabled candidate?

    The trouble is disabilities vary widely and affect us all in such different ways.

    On the other hand, I'm happy to see medical issues added to ADA. My ostomy issues come up as an example of how that could impact HPS'ers. If I have an issue at work, I need a private bathroom. And if there isn't one available, I need to be allowed to go home and fix it. This doesn't happen often, but man, when it does it really stresses me out - both because of the obvious problem but also because of the worry of how I may be viewed at work. It isn't the kind of problem you broadcast to your office after all.

    I want to be clear that I'm not saying that these other categories of people don't need legal protection. And, I really don't want to get into a contest about who is "really disabled" etc. But, if we're going to make these changes perhaps we need to review them in the context of other government programs.

    It's just a concern and one I hope has been dealt with.

    June 26, 2008
    House Votes to Expand Civil Rights for Disabled
    WASHINGTON — The House passed a major civil rights bill on Wednesday that would expand protections for people with disabilities and overturn several Supreme Court decisions issued in the last decade.

    The bill, approved 402 to 17, would make it easier for workers to prove discrimination. It would explicitly relax some stringent standards set by the court and says that disability is to be “construed broadly,” to cover more physical and mental impairments.

    Supporters of the proposal said it would restore the broad protections that Congress meant to establish when it passed the Americans With Disabilities Act that President George Bush signed in 1990.

    Lawmakers said Wednesday that people with epilepsy, diabetes, cancer, cerebral palsy, multiple sclerosis and other ailments had been improperly denied protection because their conditions could be controlled by medication or were in remission. In a Texas case, for example, a federal judge said a worker with epilepsy could not be considered disabled because he was taking medications that reduced the frequency of seizures.

    In deciding whether a person is disabled, the bill says, courts should generally not consider the effects of “mitigating measures” like prescription drugs, hearing aids and artificial limbs. Moreover, it adds, “an impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active.”

    The chief sponsor of the bill, the House Democratic leader, Representative
    Steny H. Hoyer of Maryland, said the situation was now bizarre. “An individual may be considered too disabled by an employer to get a job, but not disabled enough by the courts to be protected by the A.D.A. from discrimination,” Mr. Hoyer said.

    The chief Republican sponsor, Representative F. James Sensenbrenner Jr. of Wisconsin, said the Supreme Court had “chipped away at the protections” of the 1990 law, leaving millions of Americans with no recourse or remedy for discrimination.

    For the entire article, see The New York Times Website.
  • Video games to help you breathe better!

    The following article appeared on the Web site ARS Techika. While it is about a program for cystic fibrosis, I can see lots of implications for other disorders like pulmonary fibrosis. Hey, entertainiing pulmonary rehabilitiation you can do at home! And lots of people don't take inhalers correctly, so learning to do it with some feedback would be useful!

    Games for Health program explores gaming-fitness connection
    By Michael Thompson Published: June 25, 2008 - 12:48PM CT
    The idea that video games can be used to help both doctors and their patients is
    nothing new, but it's a notion that is gaining an increasing amount of credibility. The Robert Wood Johnson Foundation is providing grant money to a number of research groups via its "Games for Health" program. The grants are intended to explore what gaming can do for health and fitness, and they include an innovative study at the University of Vermont College of Medicine, which received a $189,772 grant from the Foundation.

    The program at UVM is the brainchild of Dr. Peter Bingham, an associate professor of neurology and pediatrics. The research project, "Breath Biofeedback Video Game for Children with Cystic Fibrosis," is designed to examine if and how a breath biofeedback video game can improve cystic fibrosis patients' breathing techniques. These techniques will be evaluated by studying things such as self-administration of inhaled medicines and performance in respiratory exercises. Bingham collaborated with a team at
    Champlain College's Emergent Media Center to create the game's software and controller.
  • Hermansky-Pudlak Syndrome makes the news in Orlando!

    Here's a story that ran in this morning's Orlando Sentinel. Way to go Florida team! And way to go Orlando Sentinel. I've been writing to reporters at the Sentinel for years. I'm so glad they picked up the story when we were in town! It might be nice if HPS'ers left some nice comments in the comment section. Let them know what a difference that coverage can make!
    Puerto Ricans at higher risk for rare, dangerous form of albinism
    Jeannette Rivera-lyles
    Sentinel Staff Writer
    June 26, 2008

    As a child, Debbie P�rez's nearly white hair, fair skin and pale-blue eyes made her stand out among her Puerto Rican family members.Little did anyone know that the differences went beyond appearance. It wasn't until P�rez was an adult that she was diagnosed with a rare -- and potentially lethal -- form of albinism called HPS (Hermansky-Pudlak Syndrome) that affects Puerto Ricans at a much higher rate than any other group.

    "I bruised very easily and had nosebleeds that lasted four hours," said P�rez, of Orlando. "But I came to accept that as normal for me."Her condition was far from normal.In addition to the sometimes obvious physical differences, albinos with HPS have blood-clotting problems that can cause death and are prone to intestinal ulcers.

    Some will develop pulmonary fibrosis, a deadly lung disease.

    In the population at large, only one person in 500,000 carries the HPS gene.

    But among Puerto Ricans, - go to the Sentinel Web site to read the whole story -,0,7662124.story
  • Progress towards talking books joining the modern age

    Here's another press release I thought many of you would find interesting. I used to constantly use talking books from the Library of Congress. But, to be honest, the cassettes, or even worse the records, are so combersome now that I haven't used the service in several years. I can't even find any place that can repair my four-track tape recorder. So, I'm very glad to hear the books are going digital. Ideally, they could be made available online to download. Now, wouldn't that be cool!!!! We'll see what happens - you know how legislation works - it isn't over until the guy in the White House says so, and then even sometimes it isn't a done deal. I suspect that with Mrs. Bush being a former librarian, however, that they'll likely smile on this effort. I'd like to think so anyway.

    CONTACT:Christopher S. DanielsenPublic Relations Specialist National Federation of the Blind(410) 659-9314, extension 2330(410) 262-1281 (Cell)

    National Federation of the Blind Applauds Congressional Subcommittee Action on Talking Book Program
    Increase in Funding Will Preserve Literacy for Blind Americans

    Washington, DC (June 24, 2008): The National Federation of the Blind, the nation’s oldest and largest organization of blind people, today applauded a vote by the House Appropriations Subcommittee on the Legislative Branch to increase funding for the Talking Book program operated by the Library of Congress.

    The vote, taken yesterday by the subcommittee, will increase funding to convert the collection of Talking Books, currently recorded on cassette tapes, to new digital technology. The conversion is needed because cassette tapes are now obsolete and the machines to play them are no longer being manufactured. The new digital Talking Books will last longer and include advanced features allowing the blind to navigate the recorded books in the same way a sighted reader flips through a printed book.

    Dr. Marc Maurer, President of the National Federation of the Blind, said: “Yesterday’s vote by the Subcommittee on the Legislative Branch will dramatically increase access to literacy and information for the ever-increasing number of Americans who cannot read print and therefore rely on the Talking Book program. Congress has sent a strong message that blind Americans are equal to the sighted and that access to public library service for blind Americans is just as important as it is for sighted Americans.”

    Debbie Wasserman Schultz, chair of the House Appropriations Subcommittee on the Legislative Branch, said: “One role of the subcommittee is to exercise stewardship of the programs of the Library of Congress, and the Talking Book program is a vital resource that ensures that the Library is serving all Americans. It is our nation’s public policy that all Americans are equal, and funding the Talking Book program is a tangible expression of that policy.”Tom Latham, the ranking member of the subcommittee, said: “The Talking Book program is a critical service of the Library of Congress that provides blind Americans with the reading materials they need for education, professional development, and leisure. The subcommittee is pleased that we were able to allocate sufficient funds to advance the conversion of Talking Books to newer, more advanced technology that will serve the needs of the program’s patrons for years to come.”

    Yesterday’s vote allocated $34.5 million for the Talking Book program. This amount will allow the Library of Congress to complete the conversion of the collection of Talking Books to a digital format within three years and provide for the manufacture of special machines to play the new books. Books and the machines to play them are loaned to patrons through a network of cooperating libraries throughout the United States. The funding provided, if approved by the Senate, will ensure that new machines are distributed to the program’s patrons well before the antiquated cassette machines they are currently using can wear out, as well as giving patrons access to thousands of titles in the new digital format.


    About the National Federation of the Blind
    With more than 50,000 members, the National Federation of the Blind is the largest and most influential membership organization of blind people in the United States. The NFB improves blind people’s lives through advocacy, education, research, technology, and programs encouraging independence and self-confidence. It is the leading force in the blindness field today and the voice of the nation's blind. In January 2004 the NFB opened the National Federation of the Blind Jernigan Institute, the first research and training center in the United States for the blind led by the blind.

  • Making headway in Florida!

    Last night I talked to Donna to get an update on how the Florida outreach was going. The answer is VERY WELL. Donna said that she felt like if she turned around right then and left that already the week had been worth all the work, and they weren’t even half finished.

    When I spoke to her they’d already had four doctor/medical personnel sessions where Kevin and Dr. Markello presented. They averaged about 38 to 40 attendees at each event, except for the one last night that had a turn out of 58!

    The group was also interviewed by La Prensa (sp?), the local Spanish language newspaper. An article is supposed to come out Thursday and then another follow-up article the following Thursday. Today they had more medical meetings as well as an interview with the Orlando newspaper. Telemundo was planning to follow them around today as they worked on outreach.

    Thursday evening is the big patient event. I can hardly wait to see how that goes and how many people attend.

    While it is an HPS-related event, it’s open to anyone with albinism. There will be a low-vision doctor giving a presentation who has more than 50 patients with albinism. And, there’s going to be food! Grin! Debbie has recruited an army of chefs and Elsie has gotten quite a bit of food donated. It will be a great time!
  • Janet’s had another minor setback

    Last night I spoke with Janet. She was having a little more trouble than she’s had the past few times I’ve talked to her. They’ve got the blood infection pretty well taken care of, it sounds like, but the infection has caused some fluid to build up around her new lung. Yesterday they had to put a tube in to drain some of it off. Janet wasn’t thrilled, but as usual she always looks at the up side. She’s definitely a cup half full type person. But, this means she’s still in the hospital. And it means she had to go back on some oxygen while they resolve this fluid issue.

    She was coughing more last night than she has since I’ve talked to her post transplant, but she said that’s a good thing – it means she’s getting the stuff out of her lungs.

    The good news is they kicked her out of the ICU so now she’s in a regular hospital room. That’s progress!
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