Living on the frontlines

The following announcement ran in the local paper in Oyster Bay. If you happen to live in the area and want a great way to get into the holiday spirit, come on out to this musical event. There will be snacks and a "Christmas Store" full of holiday gifts that will benefit the HPS Network. Please pray for the success of this event. It's one of the larger HPS fundraisers of the year. Here's the announcement: The 7th Annual HPS Benefit Christmas Concert will be held in the Oyster Bay Performing Arts Center at Oyster Bay High School on Friday, Dec. 5 at 7:30 p.m. The Long Island musical group "J" will feature the music of JoAnn Criblez and John DiGennaro. The concert is free though any donations collected will help benefit people with Hermansky-Pudlak Syndrome (HPS). For more information visit www.hpsnetwork.org.

I think this past week I set a record for this blog. I don’t think I’ve ever gone so long without blogging – but to be honest, I felt like crap. And if I’m not even blogging, you know I’m not feeling well. Last Tuesday I started to feel yucky. I was congested, felt like I had a sinus infection, sore throat and a cough. I was pretty sure it was a virus because I was already on an antibiotic. Regular readers will remember I’ve had this rather embarrassing problem for the last year in that I’ve contracted some kind of skin infection. It seems isolated to my breasts, but as the sores heal, they bleed. And being that I’m an HPS’er, they really bleed. I’ve missed work over these things bleeding. It sometimes bleeds so badly I look like I’ve been in a horrible accident, or shot or something. One of the doctors I saw in New York (more on that later) put me on an antibiotic for that. It has helped, but hasn’t cleared the infection. At any rate, this was a pretty good antibiotic and everything c...

While I was offline hacking up a lung, I got an e-mail from the folks at www.goodsearch.com . The checks for the last year have been mailed. This is a bit of an estimate, but I believe we earned $141 this year. A nice chunck of that came from the Tillman's HPS video that was a winner in the Goodsearch contest. Way to go everyone! Remember, those pennies really do add up. This is one fundraiser for which we could be earning even more! Only a few folks are really doing it. Also, goodsearch now has www.goodshop.com . It works very much like www.igive.com . Shop in either online mall - both have a lot of holiday specials going on now. Again everyone - thanks for doing your part for the HPS team and goodsearching!

I've been under the weather (more on that later) and so I haven't posted an update in two weeks. But, in the last two weeks we've added two new people to the HPS database - that puts us at 46 to go on the 100 People Search.

Why go to the mall when you can give a gift of the cure? The Hermansky-Pudlak Syndrome Network is selling its holiday CD this Christmas season and 100 percent of the proceeds go to help fund the Network's mission to find the cure for HPS. If you click on the banner above you'll be taken to the HPS Network Web site where you can buy the CD online. Then, send the Network an e-mail and let them know where to ship it. The Network will happily gift wrap the CD for you and include the above card with an added message from you. If you need help, you can also e-mail me at hkdawn@yahoo.com and I'll forward your request to the Network. (I am not shipping CDs - I can only help you contact the Network if you need it.) The Christmas CD was a Christmas gift to the HPS Network from the musical group "J." They have donated their time, talents and the proceeds from the sale of this CD, Another Christmas , to the HPS Network. The CD has several holiday favorites such as Sil...

You’ve probably noticed I didn’t post a lot this week. I thought that when I stopped working my fatigue would likely improve. Being under so much stress all the time has to make a person tired! Surely if that situation was dealt with, I’d get a little more get up in my get up and go. The reality is I continue to struggle with fatigue in a big way. I try to get through the night with my CPAP, but I can’t always make it. Today has been especially bad. I feel like I’ve been in a cloud all day. My sinuses are acting up and I kept waking up in the night feeling like something was stuck in my throat (post nasal drip) and feeling like my ears needed to pop. My joints have been acting up this week too. Finally the runs subsided, but were replaced by the opposite problem. Even with an ostomy, one can get constipated. Usually grape juice does the trick, but this time I drank a whole bottle of the stuff and nothing came through for almost a day. My stomach has felt crampy all week. That’s the upd...

It won't be long before many of us will be holiday shopping. The stores are already playing holiday music and putting out decorations. This is just a reminder that you can do your holiday shopping and help us to raise money to find the cure for Hermansky-Pudlak Syndrome at the same time. Go to www.igive.com . This is an online "mall" that has more than 650 merchants including stores like Eddie Bauer and Amazon.com. If you go to the merchant's site through the igive site - and you've signed up to support HPS - the HPS Network will get a percentage of the money you spend shopping. The exact amount depends on the merchant. Every little bit helps! Hey, if you're going to shop for the holidays anyway, might as well shop for the cure!

More sad news today from Burundi. Another girl with albinism, only six years old, was killed. Here's the story for those following this horrible trend. Albino girl, 6, murdered, dismembered in Africa From correspondents in Bujumbura Agence France-Presse November 17, 2008 11:24pm CRIMINALS with suspected links to witch doctors have murdered a six-year-old albino girl in Burundi in eastern Africa and taken her severed limbs. "A group of bandits armed with rifles attacked the home of a six-year-old albino called Cizanye,'' said local official Remi Sengiyumva. "These criminals decapitated her and then chopped off her arms and legs, which they took with them,'' he said. To read more go to: http://www.news.com.au/story/0,27574,24667825-23109,00.html

This is just a reminder. Please don't forget to update your contact information with the HPS Network if you move or have a contact info change. We had a lot of returned mail from the last mailing. We can't keep you updated, or contact you about a new protocol or research development that might benefit you, if we can't find you. Don't forget to keep your contact information with the Hermansky-Pudlak Syndrome Network up to date!

I haven't posted recipes in a while, but am still working on producing an HPS cookbook for a fundraiser next year. Nancy sent in this recipe with the upcoming holidays in mind. It sounds so yummy! Spiced Cranberry Sauce w/Chardonnay & orange zest: Serves 8 to 10 This tart sauce has a hint of spice that enriches the flavor of the cranberries. Serve with turkey and dressing or spoon it over ice cream, yogurt, pancakes or waffles. Ingredients 10 ounces (about 3 cups) fresh or frozen cranberries 1 cup dry chardonnay 1/3 cup sugar 1 teaspoon orange zest 1/2 teaspoon ground ginger 1/2 teaspoon ground nutmeg Method In a small pot, combine cranberries, chardonnay, sugar, zest, ginger and nutmeg, cover and simmer for 15 minutes. Using a potato masher or whisk, mash sauce until most of the cranberries pop. Cook, uncovered, until thickened, about 15 minutes more. Serve hot or room temperature.

They say an army moves on its stomach - and so does the HPS board. Donna cooked dinner for all 13 of us.

As Marie said at last year's board meeting, "You know doc, some people bring wine to dinner..." Dr. Seward, the only doctor with a private practice devoted to patients with Hermansky-Pudlak Syndrome (HPS), serves on the HPS Board of Directors and once again brought flu shots for everyone. I was so glad as I had forgotten to ask to get mine at my last doctor appointment. Here Carmen is about to get her shot. Flu shots are important for those with HPS. The last thing any of us need is something that could generate an infection in our lungs.

As I haven't posted in a while I just wanted to post and say that I'm okay. As usual, lots to blog about, but I'm tired. We had a great board meeting - it was an all weekend meeting. I think everyone is exhausted. More catching up later.

I took this pick from the way other side of the harbor.....couldn't even see the lighthouse without the lense!

Another example of my loving the distance lense on my camera - without it I could probably trip over this duck and not see it.

I'm posting this week's update for the 100 People Search early this week. Tomorrow I'm leaving for the HPS Board of Directors annual in-person meeting. It will be a busy time and I may or may not have time to post tomorrow. This week we added one new HPS'er to the Hermansky-Pudlak Syndrome patient registry. So, that puts us at 48.

On the last day of the CHEST meeting, before leaving for the airport, the HPS crew had one last stop to make. When I know we’re going to be in a particular area, I try to get census bureau data about the Puerto Rican population in that area, map it out, and then reference that against area hospitals and clinics to find the “medical” points of contact most likely to see a patient with HPS. I had found a clinic that catered to a mostly Puerto Rican population in the Philadelphia area. Donna contacted them and they were very gracious. It was arranged that on their way to the airport the HPS team would stop by with lunch for the doctors and do a presentation on HPS. Easier said than done. Picture this. That morning before leaving the hotel Donna went to a deli around the corner and ordered food for 22 doctors plus several bottles of soda. She then carried all this food back to the hotel where Ashley and Dr. Guichico from the NIH were waiting. If you’ve never traveled with an HPS’er with l...

Inner harbor at night.

We've had some wonderful fall days here. This is the tree in back of my apartment.

Here's another photo from the collection Sandra sent over. Here she is posing with Dr. Markello. If you're having trouble seeing the entire photo, for some reason the photos haven't been sizing right when I upload them to blogger - but if you click on the photo you can see the whole thing.

Here's another press release that came my way. I thought some of you might be interested. Maxi-Aids Releases List of Holiday Gift Ideas for Independent Living for 2008: Hot Items Include Low Vision Lights, Watches for the Hard of hearing FARMINGDALE, NY, November 04, 2008 /24-7PressRelease/ -- As retailers gear up for the holiday shopping season, Elliot Zaretsky, president of Maxi-Aids, today presented the company's annual list of Top 10 Holiday 2008 Gift Ideas for Independent Living. Maxi-Aids provides a full range of items to enhance the lives of the Blind, Visually Impaired, Deaf, Hearing Impaired and Diabetics, as well as those with mobility issues and other special needs. "This year there are a number of items we're excited about," said Mr. Zaretsky, "such as the new i-TELLpod Talking iPod Controller, which gives your iPod the ability to talk. This product at last makes iPods easily accessible to the blind and visually impaired.""For those comm...

Here's a press release for those that live near me. Downtown Overland Park is Hosting a Holiday Market Visit Downtown Overland Park for shopping and entertainment for the entire family Overland Park, Kan. – Get a jump start on holiday shopping with crafts, food and gift items from the area’s unique crafters, bakers and retailers every Saturday in November from 9am to 1pm. Music from local musicians, choirs, and other groups will be featured at the clock tower each Saturday during the market from 10:30am-12:30pm. Stay after for lunch and more shopping downtown. The Holiday Market is located in the 7900 block of Marty Street, two blocks west of Metcalf in Downtown Overland Park. The Downtown Overland Park Partnership is accepting applications for Holiday Market vendors. Single spots are $75 for the season, and double spots are $125. Applications are available by calling (913) 642-2222 or online at www.downtownop.org . About the Downtown Overland Park Downtown Overland Park is a 25-b...

I'm always asking HPSers to share photos of themselves we can use for HPS publicity etc. It really helps to be able to put a face on HPS. Sandra took some great pics during her last NIH visit and she sent me a few. This one really caught my eye given the level of security these days. I can't believe she managed to not only get a close-up look at the cockpit, but they even let her take a picture. But, Sandra is not shy. She's curious and she asks lots of questions - a great way to be. She should have been a reporter!

Well, the candidates on both sides have stumped across the country and by Tuesday the election will finally be over. I have to admit, I'll be thrilled. I'm tired of the robo calls and the argueing. For me, a big issues that impact my vote include healthcare and funding for medical research. A project called ScienceDebate 2008 set out 11 months ago to try to raise the profile of science-related issues in the election. They asked both candidates to respond to 14 key questions impacting science. I posted the responses from both candidates here - but just in case anyone wants to review them again before Tuesday, here's the link: http://www.sciencedebate2008.com/www/index.php?id=42 Today I got an e-mail that the organizations leading ScienceDebate 2008 wrote a letter to each candidate asking them to appoint a cabinet-level science advisor by Jan. 20th if they won. We'll see - doesn't sound like such a bad idea given the key role science plays in health care reform as wel...

For many who are legally blind or have low vision, in the past it has sometimes been difficult to vote with privacy. Things weren't always easy to read and a poll worker sometimes had to help - denying the person with a visual disabity the right to vote in private like everyone else. Here's another press release I ran across and thought some blog readers might find it useful. This is about a nationwide toll-free number you can call if you have trouble at the polls. National Federation of the Blind Launches “Project VIP” to Help Blind Voters on Election Day 10/21/2008 FOR IMMEDIATE RELEASE CONTACT:Chris Danielsen Public Relations Specialist( 410) 659-9314, extension 2330 (410) 262-1281 (Cell) cdanielsen@nfb.org National Federation of the Blind Launches “Project VIP” to Help Blind Voters on Election Day Voting Specialists Will Provide Advice and Assistance to Blind Voters Baltimore, Maryland (October 21, 2008): The National Federation of the Blind, the nation’s leading advocate f...

This is a press release that I'm just now finding as I dig out. Since so many blog readers are blind or legally blind, I thought you all might be interested. Google Settlement with Authors, Publishers Will Have Positive Results for the Blind 10/31/2008 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 Google Settlement with Authors, Publishers Will Have Positive Results for the Blind Terms of Proposed Settlement Agreement Will Revolutionize Blind People’s Access to Books Baltimore, Maryland (October 31, 2008): The National Federation of the Blind, the nation’s leading advocate for access to information by the blind, announced today that the recent settlement between Google and authors and publishers over the Google Books project, if approved by the courts, will have a profound and positive impact on the ability of blind people to access the printed word...

The forms are out for the second annual Martin Kirshner Scholarships. The scholarship fund awards $3,000 annually and is funded by the Kirshner family in memory of their father. Mr. Kirshner was a loyal supporter and contributor to the Hermansky-Pudlak Syndrome Network. This is the second year for the scholarship program. Information was mailed to all HPS families registered with the HPS Network. If you did not get the information, it may be that your contact information in our database is out of date. Call the HPS Network to get more information. Applicants may include both those with HPS as well as the child of a person with HPS.

This article appeared in a paper in Tanzania. VP to receive petition against albino butchery FINNIGAN WA SIMBEYE Dar es Salaam A PETITION with close to 6,000 signatures from several countries in the world condemning recent indiscriminate killings of people with albinism will be handed over to Vice- President, Dr Ali Mohammed Shein, this week. The chairman and founder of Under The Same Sun, a Canadian charity group in defence of albino rights, Peter Ash, told this paper yesterday that over 20 killings of people with albinism which occurred recently in the country have raised a worldwide concern. ’’Tanzania has gotten on the world map, it’s attracting global attention for the wrong reasons,’’ Ash, himself an albino, said. He said the killings, mainly linked to witchcraft, were unacceptable and urged government to prosecute the offenders. ’’We have already handed over the petition to the Deputy Foreign Affairs Minister and our partner, Al-Shaymaa Kwegyir (Nominated Member of Parliament), ...

I've been so busy trying to get my life in order that I'm way, way behind on some news reports, and some blogging! Boy am I behind. This is a story that appeared on the BBC on Oct. 21. I know Rick is back from his trip - I saw a facebook comment saying he was in London - so I'm sure his site will have some interesting updates for those that are interested. Albino girl murdered in Tanzania Five people have been arrested in north-western Tanzania for killing a nine-year-old albino girl on Sunday night, police have told the BBC. Police commander of Kahama district Shaibu Mohamed said the attackers broke down the door to her home and dragged her outside and cut her throat. They chopped off her lower legs and some hair which they made off with. About 30 albinos have been killed in Tanzania this year, their parts wanted by witchdoctors for "get rich" potions. The girl's murder - in Segese village - happened hours after President Jakaya Kikwete promised to do more to...

Here we all are at the food court.

During the trip Ryan, Sara and I visited my friend Leann and her husband who live in Baltimore. We had a great afternoon!

I've finally had a chance to process some more pictures. Here's another one from our last NIH trip. Elsie is posing next to the statue from Florida at the Capitol.