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    The HPS Network presented to the medical staff at Soundview Health Clinic in the Bronx on Feb. 24th. The clinic serves a heavily Puerto Rican population. Donna Appell explained the ins and outs of Hermansky-Pudlak Syndrome and the services the HPS Network can offer patients.
The Network served lunch to the assembled medical staff, thanks to the quick work of Marie DelVecchio, who put together lunch for 30 with only a day’s notice and brought it to the clinic.
Brenda Lopez, Leticia Colonio and Heather Kirkwood were also on hand to answer questions about HPS and allow physicians to observe the nystagmus in their eyes and the variations in their coloring.
The Soundview clinic staff showed a great amount of interest in HPS and expressed a willingness to do whatever they could to help the HPS community.
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  On Feb. 24th Brenda Lopez, Leticia Colonio and Heather Kirkwood spent an hour on the streets of the Bronx handing out chocolates and brochures about Hermansky-Pudlak Syndrome in English and Spanish. The trio focused on a neighborhood near Lincoln Hospital that has a large Puerto Rican population. Brenda Lopez obtained permission from the manager of a neighborhood CVS Pharmacy to stand at the store’s entrance and pass out information. It was the trio’s hope that the brochures might generate greater community awareness and eventually, through the grape vine, find their way into the hands of those that need the information most.
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Today was a tough day for me. It was one-part a crappy medical day (literally) and to be honest, I was retreating into the Heather cave. I felt incredibly anxious and blue knowing that today there was an FDA hearing about Pirfenidone and that it could easily go one way or the other. If the committee decided Pirfenidone wasn't a good idea, it could effectively be a death nail in something I truly think holds some promise.
Needless to say, I didn't get a lot done today. I slept a lot, spent a lot of time in the "throne room" and drank pitchers of water.
This evening I was finally brave enough to log on and see what happened at the hearing. I am pleased to say the panel of outside experts that are advising the FDA voted 9 to 3 to recommend approval. That doesn't mean it's a done deal. The FDA doesn't have to listen to what they say, but it puts us one step closer.
I read through press reports, which I must confess, weren't all glowing and glee. Several of the people that voted yes aren't convinced Pirfenidone makes much difference, but they felt the hope it offered to patients outweighed what they considered small risks and minimal side effects.
Having now watched several HPSers on the drug for more than a decade, and maybe because I'm a patient, I can't help but feel a little more optimistic than they do - but I'll take what I can get.
BTW - Intermune, the company that makes the drug, won't comment on what they plan to charge. I know it won't be cheap. The brand name of the drug will be Esbriet. Wonder how they came up with that?
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For those who are able to work, this could be a great opportunity. The federal government offers very generous benefits and they are good about adaptive tech etc. Ryan's wife Sara passed this along, and I can think of so many people for whom it would be a great idea. Check it out: http://www.usajobs.gov/DisabilityHiringEvent.aspHave you explored opportunities to work for the Federal government, but were overwhelmed by the application process?
Do you want to work in an environment that embraces diversity and inclusion and the talent you offer?
Are you interested in a career opportunity with benefits and the potential for career progression?
Are you a Veteran with a 30% or more disability rating who wants to extend your service to your Nation? If so, now is the time for you to begin your career of service. The Office of Personnel Management (OPM) and the U. S. Department of Labor’s Office of Disability Employment Policy (ODEP) are sponsoring a historic day-long Federal Hiring Event for People with Disabilities. Representatives from many agencies will be reviewing resumes prior to the event, and inviting prospective candidates for interviews.
HOW TO PARTICIPATE?
Review the Hiring Event information, as well as the Individuals with Disabilities page, or Veterans page on USAJOBS.gov. You must submit your resume to the following email address: Hiringevent@opm.gov. Documentation supporting your disability (e.g., proof of disability and job readiness certification letters) and/or veteran’s status (e.g., VA letter and DD-214) can be provided with your resume, or at the time you are interviewed. [Note: To ensure the hiring process moves quickly and to expedite the agency's ability to make tentative offers, you are strongly encouraged to submit your supporting documentation along with your resume.] Disabled veterans with less than a 30% rating or with non-service connected disabilities are encouraged to submit their resumes, along with proof of disability and job readiness. If you need assistance submitting your resume or have any questions regarding this Event, including the type of documentation required please forward your inquiry to the following email address: Hiringevent@opm.gov.
WHAT TO EXPECT NEXT?
You will receive notification that your resume has been received. Agencies will review your resume and any supporting documentation provided. You may be invited to attend the Hiring Event via email for an interview with one or more agencies and for one or more available positions. Applicants who are scheduled for interviews must bring the required documentation to the Hiring Event, if not previously provided. Continue to check this site for updates.
FAQsClick here to visit the FAQs section.
The following agencies will participate in this event. Please click the agency names listed below to view job opportunities. Agency for International DevelopmentAgriculture, Department ofCommerce, Department ofNational Institute of Standards and TechnologyCensus BureauCommodity Futures Trading CommissionConsumer Products Safety CommissionDefense, Department of
Army Materiel CommandDefense Information Systems AgencyDefense Intelligence AgencyDefense Logistics AgencyNational Geospatial Intelligence Agency Naval Air Systems CommandNaval Facilities Engineering Command NavyUnited States Marine Corps & USMC Wounded Warrior ProgramEducation, Department ofEnvironmental Protection AgencyFederal Communications CommissionFederal Energy Regulatory CommissionGeneral Services AdministrationHealth and Human Services, Department ofNational Institute on AgingNational Institutes of HealthHomeland Security, Department of
Domestic Nuclear Detection OfficeOffice of Health AffairsInterior, Department of
Fish and Wildlife ServiceJustice, Department ofLabor, Department ofOffice of Administrative Law JudgesOffice of Employment and Training AdministrationOffice of the Assistant Secretary for Administration and ManagementOffice of Workers' Compensation Programs, Division of Energy Employees Occupational Illness Compensation.National Aeronautics and Space AdministrationNational Security AdministrationNational Transportation Safety BoardNuclear Regulatory CommissionOffice of Personnel ManagementSecurities and Exchange CommissionSmithsonian InstitutionSocial Security AdministrationTransportation, Department ofFederal Aviation AdministrationTreasury, Department ofBureau of the Public DebtDepartmental OfficesInternal Revenue ServiceVeterans Affairs, Department ofOffice of Inspector General
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 Letty, Ashley and Brenda - three HPS'ers on the move for outreach!
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Letty, Ashley and Brenda - three HPS'ers on the move for outreach!
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This coming Tuesday the Food and Drug Administration (FDA) is holding a hearing that is part of the process for their review of whether to approve or deny Pirfenidone as a treatment for idiopathic pulmonary fibrosis.
This is the same drug the National Institutes of Health used in it's study to treat the pulmonary fibrosis of Hermansky-Pudlak Syndrome. It is the drug study I participated in, but was on placebo.
While FDA approval of Pirfenidone doesn't automatically mean everyone with HPS that needs it will get it; it is the first step in the journey.
Please send up some prayers and good thoughts for the people in the position to make this very important decision about Pirfenidone.
We know that it isn't a cure. We know that it has side effects.
Still, when you have pulmonary fibrosis - even pulmonary fibrosis that seems stable and is mild as mine is - you still know in the back of your mind that someday it will progress. You know you have this disease process underway inside of you that is 100 percent ultimately fatal and for which there is no treatment.
A drug that would treat pulmonary fibrosis - even only a little - would offer so much hope to a community of patients that don't have much to hang their hats on now.
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Donna Appell and Dr. Samuel Seward presented at Lincoln Hospital Grand Rounds in the Bronx on Feb. 23rd as part of an outreach initiative in New York City. Dr. Seward presented the scientific information about Hermansky-Pudlak Syndrome, while Appell presented information about the HPS Network and the resources it has to offer those affected by HPS. About 40 physicians and residents attended the lecture.
The opportunity came about thanks to the groundwork laid by HPS Network member Brenda Lopez. Lopez made the initial contact with the hospital and acted as a liaison between the Network and the hospital’s public affairs office. Heather Kirkwood also attended the lecture and met with the public affairs office afterwards.
After the presentation, several physicians stayed to ask additional questions. The hospital public affairs office also expressed an interest in working with the HPS Network on neighborhood public health outreach projects in the future.
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   I've always like the way branches look in the winter time, naked and exposed so that you can see all the little twigs if you look hard enough. I always thought just nothing but branches would make a cool pen and ink drawing some day, although with more bark than you can see here. I took these in the parking lot of my apartment complex trying to get a feel for the new camera. The telephoto lense isn't as powerful. In the last image, you can see two bird nests if you look hard. With the old camera I could zoom in enough to see the actual nests in their whole. Still, the new camera took much better pictures in a crowded bar with funky lighting than the old one would have - so maybe more of my conference photos will come out this year.
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On my recent journey, one of my most prized posessions was distroyed. Delta Airlines smashed my camera. So far I've had little satisfaction on the issue. They almost seem to be intentionally not responding. Usually when I fly from Kansas City to New York, it's a fairly decent-sized plane. This time it was a regional jet and I had to gate check my roller bag with all of my most valuable and fragile things in it (thus why it's my carry on). I've never had trouble gate checking bags if necessary for small planes. This time, however, when I got to New York and unwrapped my camera from all the things I'd put around it to protect it (a day later), I discovered my camera in a million little peices. It wasn't just cracked - it was demolished! What is amazing to me is that the bag its self was undamaged. My CPAP mask, made of easily breakable plastic, was undamaged. It was as if someone had taken the camera out and broken it, then stuffed it back in. Very strange. I'm very unhappy with Delta. They seem to think that because it wasn't a checked bag, they have no responsibility. I argue that the minute they required me to gate check the bag, they took responsibility. Grrrrr....... While in Boston, I bought a new camera. It was a purchase I would have rather put off for better financial times, but I take photos all the time for work as well as play. In Boston I could consult the expertise of Frankie the Cat, and I didn't have the extra cab fare to go and try out different cameras. These are photos of downtown Overland Park I took yesterday while playing with the camera trying to learn what all the buttons do. This is Santa Fe - so named because the main street of Overland Park was part of the Santa Fe trail West. Overland Park was once a town separate from the city, but now the city has grown up around it. Yet, when you walk around the downtown section of Old Overland Park, you feel like you're in a small Kansas town.
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These are a few photos from this past weekend. My good friend Tina J and Karen (who now lives in San Diego, but was visiting for the weekend) celebrated their birthdays. Tina B (yes, I know a lot of Tinas) also had the grand opening First Friday of her art exhibit. I missed it, as well as the game night that took place after this dinner. I've had a lot of fatigue issues this week and just wasn't up to doing all the social things I had planned. Very frustrating! You can see from the last photo that we had a lot of blind and VI folks at the dinner and they came with their four-legged companions. The restaurant owner is an old friend and knows everyone from the days when we all lived in Kansas City and all spent a lot of time at this restaurant - Governor Stumpy's. As we all came in, he exclaimed, "This place has really gone to the dogs!" I counted at least five guide dogs, and I probably missed a few behaving under the tables. There were at least 40 guests. A great time was had by all!
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These are a few photos from this past weekend. My good friend Tina J and Karen (who now lives in San Diego, but was visiting for the weekend) celebrated their birthdays. Tina B (yes, I know a lot of Tinas) also had the grand opening First Friday of her art exhibit. I missed it, as well as the game night that took place after this dinner. I've had a lot of fatigue issues this week and just wasn't up to doing all the social things I had planned. Very frustrating! You can see from the last photo that we had a lot of blind and VI folks at the dinner and they came with their four-legged companions. The restaurant owner is an old friend and knows everyone from the days when we all lived in Kansas City and all spent a lot of time at this restaurant - Governor Stumpy's. As we all came in, he exclaimed, "This place has really gone to the dogs!" I counted at least five guide dogs, and I probably missed a few behaving under the tables. There were at least 40 guests. A great time was had by all!
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 Too often lung health takes a back seat. While other disorders and organ systems have special days, special logos, and lots of public health campagins to educate people about risk factors, little is done to educate the public about lung health, besides the need to stop smoking (and that's a good thing, don't get me wrong.) 2010 has been deemed the Year of the Lung by professional organizations and patient groups around the world. It's a global effort to improve awareness among the general population about good lung health. Check to see if you're doing all you can do by taking the 2010 Year of the Lung Challenge on the HPS Network Web site: www.hpsnetwork.org. (Thanks Matt for building this page for us!)
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   People with albinism - indeed people with any sort of issue that sets them apart from others in any way - can understand how great it is to get together with others who share your experiences. For those of us with HPS, this is especially true. We look forward to our conference every year in a way that's just different than other conferences I've been involved with. When we get a chance to get together socially, its an especially delightful treat. I know many of the HPS'ser that attended Ryan and Sara's wedding commented on it. It was nice to have an occassion to get together that had nothing to do with HPS. While HPS occassions are usually fun, it was still a rare and special treat. A few weeks ago Ryan and Sara took a road trip and they visted the Tillmans and McIntyres in Greensboro. Karen organized a dinner at her house and Tommy sent the above photos. I wish I could have been there myself. I'd say, well, conference is only a few weeks away - except that I have so much to do for conference, that this thought actually causes panick!
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