Living on the frontlines

This past weekend we had the annual Kansas City Bowl-a-thon for NOAH. NOAH is the unbrella organization for people with albinism. We had such a great turn out this year, although once again i was the only adult with albinism. Where is everyone else? Grin! As you can imagine, I had a blast with all the little kids though. I'd love to write more, but I'm in New York working on an HPS outreach and it's a busy week. Here are some photos though - these kids were all just too cute for words!

Don't forget to RSVP about the New England HPS get together dinner if you plan to attend. We have to order the food in advance from the restaurant so we're trying to get an accurate head count. Please RSVP by Friday. Thanks! When: Friday, February 26, 2010 7:00pm - 10:00pm Where: AEGEAN Restaurant 257 Cochituate Road, Route 30 Framingham, MA 01701 Come join the HPS Network for dinner and fellowship. HPS Network President and Founder Donna Appell, and Vice President Heather Kirkwood will be in town for the event. Come get to know the rest of your local HPS family! Please RSVP before 1/22/2010 by calling 508.395.7523 For additional information please contact Carmen Camacho at 508.395.7523

For the past few months www.igive.com has hosted a contest. Charities who can get new members to sign up with igive and visit one store (no purchase necessary) get a dollar. The catch is it's a race and thus the funds go fast. This time they've given us advanced notice. I've copied the info below - help us get the word out - and remind your contacts not to sign up until the given day otherwise it doesn't count. Also ask them to do it as soon as possible after noon central time as once the funds have been awarded, that's it. Thanks for the support! Hi Supporter, Over the last several months, we've tried something new (a series of time-sensitive challenges) to help Hermansky-Pudlak Syndrome Network and all the causes listed at iGive. It's worked better than we ever expected. To date, we've donated over $10,000 as a result of these challenges. So we've cooked up another challenge. This time we're making a change suggested by many of your peers.

Want yet another reason to look forward to the 17th Annual HPS Network Family Conference? How about a chance to check out some of the latest in low vision technology from MagniSight! This year Dr. Miller from MagniSight will be exhibiting the company's low vision solutions, including a brand new product. Stop at their table just off of the registration area on Friday, or outside the main meeting room on Saturday, to check out the technology and to register to win a free, refirbished, color CCTV.

I found the following Website and organization thanks to a friend with the Pulmonary Fibrosis Foundation. It's called Campaign Zero. The purpose of the grouop is to empower patients and their care givers to work with medical professionals and help reduce medical errors, preventable infections or preventable injuries. The sad truth is we don't have enough nurses in this country. They get tired and overwhelmed as more and more is expected of them. Rather than just complain, this group is trying to educate families about how they can help out when a loved one is in the hospital. The site has a ton of resources - www.campaignzero.org .

The Social Security Administration has added 38 new diseases and disorders that are considered to be so severe that they require immediate processing of social security applications. The world of social security is very confusing. I want to start out that I am not an attorney - just a consumer who spent the last year working my way through the system to get social security disability income or SSDI. Adding Idiopathic Pulmonary Fibrosis to the list of disorders is a step in the right direction as typically, the life span from diagnosis to death is typically 3 to 5 years. To spend as much as two of those years in limbo with social security was a huge problem for many patients. For those of us with Hermansky-Pudlak Syndrome, however, I think the impact of this new rule will be slightly different. For starters, many of us get a diagnosis of pulmonary fibrosis and live much longer than this. It isn't necessarily because our disease process is in any way less severe - it's just becau

I've been meaning to make note of this on the blog for a while now. In the last few years we had updated our literature to reflect the findings that the pulmonary fibrosis of HPS only seemed to occur in types 1 and 4. I had been made aware of a case of a type II with pulmonary fibrosis, but it wasn't directly and I hadn't seen it documented in the literature. This week, while checking for any new papers on HPS, I found one out of the UK. It was a case report on two non-related people with HPS type 2. They were children. One developed pulmonary fibrosis at 36 months of age. We need to update our literature and the "Presentation in a Bag" to reflect this possibility. HPS type II seems to be different than other forms as it involves a severely compromised immune system. I'm not a scientist or a doctor, but I find that intriging. Am I misunderstanding that? Often problems related to pulmonary fibrosis are because our immune system in our lungs is swatting at flies

Today wasn't exactly the most productive day on record. I felt so tired today, and I'm not sure why. By three in the afternoon I gave up and took a long nap. This evening I have another headache, although not as severe as the one a few days ago. What's up with these headaches? This one feels more like a sinus headache than a migrane though. I haven't had joint pain in a while, but last night I was awake with it about 4:00 am. I got up and took a hot bath, which helped enough to get me back to sleep. No drugs required. This afternoon I had stomach cramps and broke out in hives. I"m not sure what would be setting off my allergies this time of year, but something is. The hives are also likely partly because my skin is so dry. I keep putting lotion on it - and not the nice smelling foofoo lotion. Nope, I mean the no smelling lotion from the skin doctor. I had to drag the humidifer up from the basement this week because I was having so many nose bleeds. Thankfully I don

This week we had one new HPS'er join the patient registry. That puts us at 28 to go on the Hundred People Search or H.P.S. The clock for this year is running down. If you know anyone that has HPS and hasn't registered with the Network, please encourage them to do so. We have to prove to the researchers that we're out here, right now more than ever. Even if they don't want to participate, it is extremely helpful to everyone with HPS to know that they are out there. Thanks to everyone who stands up to be counted.

Thanks Mary Beth....

This painting is not for sale. Grin - it's my mom's birthday present. She used to live in Washington State, so it has some meaning for her as it seems to be a place she knows. It's 12 by 16 acrylic on canvas board. I love painting the flowers - I'm so allergic to them it's about the closest I get!

I am very sorry to report that we’ve had to pull out of Digestive Disease Week this year. Last year was our first time to attend this amazing event, and it was long overdue. Although severe bowel issues only affect between 15 to 20 percent of those with HPS, for those of us with bowel disease, it can make a major impact on your life – even when it’s mild as mine is now. Over the years we’ve had to set outreach priorities. We’ve spent money on outreach to lung doctors and researchers first because most HPS’ers with types 1, 2 and 4 pass away from the pulmonary fibrosis of HPS and not the bowel disease. While the gut issues can make you down right miserable and incredibly ill at times, we don’t generally die of bowel disease. Several years ago a protocol to study the bowel disease of HPS was opened at NIH. We were extremely hopeful about it as we hoped it would not only be a way to gain more understanding of this aspect of HPS, but it would be a way for some patients to obtain much neede

This is one of my recent paintings. As before, although I usually sell my artwork to raise money for the HPS Network, right now I'm selling it to raise money for Heather as the Network can't afford to hire me right now, thus I need some supplimental income. I must confess - I've debated about whether to post this painting. It isn't my favorite. I was experimenting. An artist friend of mine insists she likes it and that I don't because most of my work has more detail in it. I was playing a bit with this one. It's acrylic and on 8 by 10 canvas board, so it isn't very big. I'm asking $30.

Zumba for HPS! Friday, March 5, 2010 8:00pm to Midnight Li Greci’s Staaten, 697 Forest Ave. Staten Island Entrance Fee: $20.00 donation RSVP required Dance for the Cure! Come out and enjoy an evening of Zumba for HPS on Friday, March 5th at Li Greci’s Staaten, 697 Forest Ave, Staten Island. Tickets must be purchased in advance. Visit Bubble’s Playhouse, 2102 Clove Road, to purchase tickets. Call them at (718) 447-7779 or e-mail Liz Diaz at: liz69diaz@aol.com . A cash bar will be available as well as several surprise performers! Thanks to our event sponsors, Li Greci’s Staaten, Bubbles Playhouse and HiNrG Sound Pros.

We have another successful HPS lung transplant to share!!!! Many of you might remember Rebecca from conference two years ago. Well, in December she had a successful lung transplant and seems to be doing AWESOME! As she put it in her e-mail - I can BREATHE! We like breathing - it's generally a pretty good thing. Grin! Rebecca is looking forward to sharing her experiences, but unfortunately, has to undergo some follow up tests at conference time this year. I'm sure you all will join me in a great big YAHOO! to celebrate this fantastic news! I think this makes six HPS lung transplants that I know of. A big round of applause for Rebecca! It's such progress when you consider only a few short years ago no one with HPS was being accepted by lung transplant centers. Every successful transplant like this helps us all along the way should we ever also need a lung transplant.

I'm just posting this as a service to any readers who might like to know. If you'd like to get your notices from Social Security in alternative formats, here's how to do it. This was a notice on the Social Security Web site I found while looking for some other information. Class Notice in American Council of the Blind Court Case [ View .pdf ]] ( En Español .pdf ) Social Security Administration Important Information Social Security Administration Wilkes Barre Data Operations Center P.O. Box 67600 Wilkes Barre, PA18767-7600 Date: December 31, 2009 We are writing to you because our records show that you are blind or visually impaired and you are covered by a recent court decision. The court case, American Council of the Blind v. Astrue, recognizes that you have the right under federal law (Section 504 of the Rehabilitation Act) to ask for notices and other information about your benefits from us in a format in addition to print. This notice tells you how you can ask for your p

Below is a summary of President Obama's budget proposal and how it would affect several agencies near and dear to those of us with rare diseases such as the National Institutes of Health. It is only a summary and right now I'm not commenting - only sharing. The summary comes from the American Thoracic Society newsletter. They do a great job of following these things. Of course I'm happy to see that Obama wants to give more money to the NIH, but I want to learn more about which programs might be affected. The ATS follows the National Heart, Lung and Blood Institutes's budget - and that is slated to increase which is a great thing for lung disease. Our research, although pulmonary fibrosis affects our lungs and we are a bleeding disorder, is housed under the genetics branch. Right now I'm not able to find a summary of how the budget will affect genetics - but I'll keep looking. At any rate, this is a long way from becoming reality anyway. It will have to go throug

This week three new people joined the HPS registry, and that puts us at 29 left to find for the Hundred People Search! That's great news. Keep up the great outreach efforts, and don't forget to share with the HPS Network when you've done an "act of outreach" no matter how small.

I am not sure if Hermansky-Pudlak Syndrome meets the criteria for this scholarship - however - just looking at the summary write up, I don't see why it wouldn't. They don't specify a particular bleeding disorder, and it certianly is chronic. Here's the information should anyone want to check it out. Lawrence Madeiros Scholarship for Those With a Bleeding Disorder or Other Chronic Disorder Eligibility Requirements: 1. Applicants must be diagnosed with a bleeding disorder or other chronic disorder. 2. Applicants MUST be Graduating from High School in the year of the Scholarship Award. 3. Applicants must have applied to, been accepted at, an accredited college or university. Deadline: June 1, 2010 The Lawrence Madeiros Scholarship Attention: Scholarship Panel P O Box 11 Mayfield, NY 12117 Link: http://www.adirondackspintacular.com/pages2/scholarship.html Categories: Bleeding Disorders , Blood , Blood Disorders , Chronic Diseases , Rare Disorders , Scholarships , Inheritabl

This is another bill being introduced I find particularly interesting. I have run into these problems along the way. Back when I worked in a traditional office our copying machine had a tiny touch screen with dark purple on light purple background (lousy contrast). I knew what order to push the buttons in, but if anything went wrong, (and it did often) I had to go and get a sighted colleague to help me. Dido for the UPS and FedEx kiosk in our office.....which I had to use often and always had to get help. When I fly and I can't read the kiosks - which happens sometimes - I have to stand in the line with everyone that has a problem so it can take forever. It's second-class treatment. It's also a problem for which there's a fix. U.S. Representative Jan Schakowsky Introduces Technology Bill of Rights for the Blind 1/27/2010 FOR IMMEDIATE RELEASE CONTACT: Chris Danielsen Director of Public Relations National Federation of the Blind (410) 659-9314, extension 2330 (410) 262-

I was very excited to read the following press release. Regular blog readers will remember that I've complained for a long time about the earnings limits social security disability places on recipients. Unlike social security income (a needs-based program) those who recieve SSDI (past a trial work period) risk losing all benefits if they go so much as one dollar over a set earnings limit. What this means is that they must find themselves in a position where they earn more than twice what they recieve in SSDI benefits to come out ahead losing the benefits. A lot of entry-level or part-time (a lot of folks on SSDI could work part time) simply can't re-enter the work force at that level of earnings. Or, for folks like me, there's no way to know if I earn more than the limit for say, six months, if my unpredictable health will allow me to keep earning at that level - thus making it risky to try to get ahead. I have e-mailed the NFB to ask if there is any verbage in the bill tha

The HPS Network will be doing outreach in the Boston area at the end of the month. Come and join us for an HPS Family Night. Here's the info: When: Friday February 26, , 2010 - 7:00 pm WHERE: AEGEAN Restaurant 257 Cochituate Road, Route 30 Framingham , MA 01701 http://www.aegeanrestaurants.com/ 508-879-8424 RSVP: By 1/22/2010 at 508.395.7523 Additional information: Please Contact Carmen Camacho at 508.395.7523

I was doing some research for something else, and stumbled upon this fundraising opportunity. If you've got a wide circle of friends and family - maybe a large church community etc. - this might be a relatively simple fundraiser. Sponsor a Boston Market HPS Night. Here's the info from the corporate Web site: Parents are busy people. We know. After all, we have kids, too. That's how we got the idea for our Fundraising Feast. Here's how it works: Boston Market will: Donate 15 percent of all sales (pre-tax) from your event to organization. Send fundraiser check 4-6 weeks after the Fundraiser event takes place. Provide a Customizable Flyer and Event Tickets on our website. Your organization will: Fill out our Fundraising Form . Head to your nearest Boston Market to turn in your Fundraising Form and finalize the date. Publicize your event with members of your organization. Provide reminders and the Event Tickets to the organization. Remind members to visit the designated B

I am working on a grant application to the Walgreens corporate foundation. While it's not required that we have an employee listed on our application - there is a space for it and the Foundation makes it clear they prefer charities that involve their employees. If you are an HPS Network supporter, and you work for Walgreens - and you'd be willing to let us list you on our grant application - please contact me at hkdawn@yahoo.com .

Now it's even easier to help raise money for the HPS Network. For several years now HPS Network supporters have been able to help raise money by simply using the search engine at www.goodsearch.com . The Network earns a penny for every search, and the search engine is powered by Yahoo! Goodsearch also added an online mall where a percentage of all purchases will go to the HPS Network. Other charities - charities even smaller than ours that aren't even facing the sort of life and death health issues we face, have raised thousands of dollars a penny at a time. We can do it too! Now Goodsearch is offering an HPS Network custom toolbar. That way you don't have to go to the Goodsearch page to search the Web with the Goodsearch engine or to shop at Goodsearch merchants. I think often it's easy to forget to use Goodsearch, and a tool bar at the top of your browser with the HPS logo is a great way to remember! Here's the info from Goodsearch about the new toolbar: We have s

A few days ago I sent off a grant request to the Rickie Martin Foundation. The request is a long shot. The HPS Network, technically, doesn't fall under the sort of thing the foundation funds. Their special interest (and a worthy one) is in preventing child trafficking. They do, however, fund some programs for children with disabilities in Puerto Rico. Rickie Martin is a Puerto Rican musician and performer. The Web site had no grant application process so they might not even review the request. I can't help but think, however, that there are a number of influential Puerto Rican performers who could be of enormous help to us - yet they likely don't even know we're out here. My request was for $10,000 to help fund the Network's translation bills. We will offer simultanous translation again this year at conference. Our price estimate is about $4,600 - although if more Spanish-only speakers register that will go up. Should there be any funds left, I proposed the balance