Living on the frontlines

Well, I'm here. The flight was great. I really do love Midwest Express. I hope nothing happens to them with all the rises in gas prices etc. It is so nice to fly and not feel like you've been wedged into your seat like freight. Hector met me at the airport. I enjoy riding to NIH with Hector the cab driver because he's such a great source of information about what's going on in HPSland. He gives me the down low on how NIH is going over with the crowd from Puerto Rico, whether there are any moral issues that might need attention etc. I arrived in time to actually order a real dinner. That almost never happens. Usually I get here after the last call for dinner and I get a very dry turkey sandwich that tastes something like cardboard. Dr. Markello was here when I arrived which is always a big treat. He really should have been a professor. I really do enjoy just picking his brain about what's going on with the research. Every time I learn something I didn't know befo

The Tillmans do such a good job of putting together video - here's a video of the kids in child care playing in the park at conference! http://uk.youtube.com/watch?v=zL6avUVKUcI

This has been a long week in the health department. Since I boobooed my stoma, it has been acting up a bit. Tuesday I had to leave work. It just isn’t worth it to try to get naked in a public restroom thank you very much. But, it took me two hours to get a cab home, meanwhile the stoma is oozing and leaking and I’m trying to pack it with paper towels. Oh what fun. It continued to do that during the night, so I stayed home the next day. I worked – actually I worked 12 hours that day – but I also had two more leaks before things started behaving. If I had gone to work, I’d have wasted all that time in the middle of the day trying to get home. Still, I think work is losing patience with all my medical crap. And that’s okay. I’m losing patience with having to freelance again in order to afford to pay my basic bills. I have this sense that things are about to change. The other thing is that I’ve been so tired this week. But, it’s hard to argue to a doctor that this fatigue isn’t normal when

I haven’t blogged in the last few days. A LOT has been going on. It was a hellish week at work and I’ve been trying to get ready to go to the NIH. I was very bummed that I didn’t get to blog about the Genetic Information Non Discrimination Act the day it actually passed the Senate. What an achievement! It’s been more than a decade in the making. We’re not 100 percent there yet, but it was a major milestone. The House version of the bill is slightly different than the Senate’s version, so they’ll have to have a committee to work out some of those details, and then it’s on to George W.’s desk. Even then, technically I doubt that will be the end. I was involved in the passing of Braille literacy legislation back in the 1990s. What I learned from observing that develop is that getting the actual needed law passed is only the first step. Once GINA passes we’ll have the tool we need. The next step will be to see how the government implements that tool. What regulations get written to impleme

Congradulations and thank you to the Tillmans! Some of you that were at conference will remember that the Tillmans were asking a number of questions and taking some video. We intend to use some of the video they shot on the HPS Web site eventually - but while we were at it the Tillmans shot some video to be used in a contest being held by http://www.goodsearch.com/ . The contest was to create a video about the cause you goodsearch for - and the Tillmans took on the challenge! The HPS Network will get a $100 donation from Goodsearch and the Tillman video will be featured on their Website tomorrow, I think. And just in case you don't know - (how could that be since I shout it from the rooftops) if you search the Web at http://www.goodsearch.com/ and choose the HPS Network as your charity, we get a penny per search. Those pennies add up! So, keep goodsearching! And if you want to see the video (if you missed it the first time) here's the link: http://www.youtube.com/watch?v=2bohi

Last night Univision ran the following story about albinism and HPS. It ran nationally. I don't speak Spanish so I can't give you a commentary - I'm just grateful for some coverage. Still, I am a bit disappointed that no contact information was given. When we did have an article run recently with a phone number to call at the end, we had eight new folks turn up. Imagine with national coverage how many we might have found. It's a shame. Hopefully there's someone out there that will google it. But, here's the link: http://video.google.com/videoplay?docid=-8317676877660950227&hl=en

Here's this morning's update from the Coalition for Genetic Fairness. Dear friends, We can hardly believe it, but GINA is at the brink of coming to the floor. It appears there is a deal, that the hold has been dropped and almost all systems are go. I say almost, because as of last night there were still a few sign-offs to be had to allow the bill to go to the floor under unanimous consent – the Senate’s preferred way of doing business.The Senate convenes at 5PM EDT today, and there is a strong possibility that GINA will go to the floor. If not today, then tomorrow – we can hardly believe it.Our allies in the Senate have thanked us, and it is to all of you we pass on that thanks – your calls and faxes had an astounding effect – we are breathless with the force of your passion. Thank you so much!Check and see if your senator has co-sponsored (below) – never hurts to jump on – so call to thank them, or call to ask them to cosponsor!We will blast the vote out to all of you as soon

I saw the following article in the New York Times yesterday. It’s about how the new governor of New York, Gov. Paterson, is adjusting as a legally blind person to his new job. It’s also about how Albany is adjusting to him. It really made me stop and think. I want to start out by saying that my comments are directed more toward the system in general than to the Governor. I have no bone to pick with him and I don’t mean to be critical of him. If I lived in New York, maybe that would be different – grin. It disturbs me that a lot is made of the fact that the governor doesn’t use Braille or a cane as though this is some sort of badge of honor. I really don’t know the governor well enough to know if this is his own attitude about these things, or the sighted media’s interpretation. To me, we as legally blind people have the right to choose the tools and techniques that work best for us. But too often those of us with low vision are only given access to half the tools. It is assumed that be

Here's the latest update on GINA from the Coalition for Genetic Fairness. Keep up the pressure! Dear all, We heard this morning from the Senate and House, Democrats and Republicans, that there is agreement on GINA across the board and it ready to be advanced, with the hope that it will be under unanimous consent – all systems look good for this week.It is absolutely essential that we all keep the heat up high – please continue to storm the Senate with calls and faxes – tap your networks and tell them to pour it on –go to other networks and get their support. We need you all more than ever. The message is simple: VOTE FOR GINA!!! You can find details of the campaign here: http://www.geneticfairness.org/action_alert6.html Thank you for this monumental step in transforming healthcare – we will be part of liberating the amazing potential of the genome for the benefit of all. Onward!

I need a sabbatical. I feel like whining. I’m tired Friday it was a battle all day to be able to work because all I wanted to do was fall asleep. I took the early bus home and was in bed by 5:00 pm. I woke up about 10:00 pm or so briefly, but went back to bed and didn’t wake up again until noon. The rest of Saturday it was as though my limbs had cement in them. I just couldn’t stay awake. I fell asleep folding laundry. Sunday I felt better. But, as always happens when I go from so tired to feeling normal, it feels as though I’ve got to get everything done right then. I did three loads of laundry. I cleaned out my fridge. I walked a mile to the grocery, bought groceries, and then walked a mile home. I cleaned out half a closet. And, I shampooed half of the carpet in my bedroom. Today at work I was dragging. I just feel so tired.

Passing this along from the HPS Parent's listserv. Gente: Tengo entendido que mañana el canal 41 de Nueva York (Univision); estarán trasnmitiendo un reportaje especial de "HPS Network" ; el programa se trasmite de 10:00 pm a 11:00 pm y se titula : Aquí y Ahora. Trataremos de publicarlo por la red.Saludos;Edgardo Mercado For English version please scroll down People: I think that tomorrow the Channel 41 in New York (Univision), goes to broadcast a special report of HPS Network, the program begins at 10:00 pm to 11:00 pm, and the name is: "AQUI Y AHORA". We go to try to post it in the network. SaludosEdgardo Mercado Para versión en español mueva el mouse hacia arriba.

Regular blog readers have heard me mention Janet, an HPS’er who is currently seeking a lung transplant. Lung transplant surgery is very, very expensive and there are a number of expenses that don’t get covered by insurance. It’s often necessary, for example, to temporarily relocate to be near the center before or after the surgery. While there is a lung transplant program in Chicago closer to home, it was not on Janet’s insurance plan, thus she’s had to be listed in Wisconsin. Janet’s friends and family are holding a fundraiser to help Janet and her family with the expenses that won’t be covered by insurance. They’re having an auction this coming Tuesday night, at 8:00 pm, at CoCo’s, 2723 W. Division in Chicago. Her friends and family have managed to secure all sorts of cool stuff to be auctioned off such as White Sox tickets, a computer, meals at local restaurants, bottles of wine and various baskets of goodies. There will also be live entertainment from several comedians. Janet’s fam

I don't know how I missed this. I guess Tommy posted this and it got past me! Grin. Here are a collection of pictures set to music of the Friday night at the conference. Once again, sorry I can't seem to post directly! http://uk.youtube.com/watch?v=_KXZRN0FzhU&feature=related

On Sunday morning at conference we had a short session that was a panel of four of us telling stories about being legally blind, and what we'd learned from a given experience. This is Carmen C.'s story. It's just too funny! Unfortunately, I can't post the video directly, STILL - not sure if the problem is with YouTube or Blogger? But, if you want a laugh, click through to see it. (Thanks Tommy!) http://www.youtube. com/watch? v=RPxlk3Ws49Q

Here's an update on the status of the Genetic Non-Discrimination Act. It actually didn't go for a vote this last week, so if you didn't get around to writing to your member of Congress, it isn't too late. Knock yourself out! Grin! I'm not including the list of supporting organizations. It's interesting, but very long. I can assure you, the Hermansky-Pudlak Syndrome Network's name is on it. Thanks everyone! Dear all, Our colleagues on the Hill tell us that it appears all systems are go for GINA this week – last week, the transportation bill took longer than expected. It might be that the bill on the floor ahead of GINA on Monday will also take a while, but the hope is that GINA can fly once it does hit the floor (probably Tuesday or later, my personal guess – one cannot time the progression of bills accurately).Staffers tell us that your calls and faxes have made the difference – cosponsors are being added every few days (check to see if your senator is a cos

Let's give a big shout out to the Springfield Falcons Hockey Team in Mass. They held two HPS Awareness Nights (and gave HPS a portion of ticket sales) - one in March and one in April. Pictured here are Sara, her little girl Christina, Ashley and Carmen being presented with a check at the second hockey game. They got to walk out on the ice on a red carpet! Thank you Falcons!

Dr. White is the doctor that does the diagnostic testing for HPS. He's seen a lot of our platelets, but doesn't usually get to meet the people those platelets belong to - so we make him a framed collection of pictures of people with HPS. We presented it to him at the conference dinner.

This week we have one new HPS'er on the patient registry. So, we're down to 97 on the Hundred People Search.

I think this is Angelina - please someone correct me if I'm wrong!

I know the guy on the right is Dan, but I'm not sure who is on the left? Can anyone help me?

Every year at conference we have what we call the Family Album. We sit in a circle and everyone says something about what happened to them in the last year. This year's conference theme was "Taking Chances." Here, Karen tells the HPS Family about her year of taking chances. I'm so proud of her! While I'd love to post the video directly, I'm still having YouTube issues and I just haven't had the time to figure out how to fix that yet - it just isn't at the top of the emergency list. Grin! Thanks for the video Tommy! http://www.youtube.com/watch?v=FoRwUaBGp88 #

Today is Health Care Decisions Day. I know that because everywhere I’ve turned today I’ve seen some story in the media about it, and about why I need to have a written plan for who will make medical decisions should I no longer be able to make them for myself. It’s as if the universe is dogging me with this. I’m supposed to be the “good HPS’er” who has it all together when it comes to this stuff, but to be honest, I’ve been putting this one off for a long time. Every time I get admitted at NIH they ask me if I have a health care proxy, and I have to sheepishly answer “no” and hope the nurse quickly moves onto the next question. The thing is I haven’t wanted to deal with this issue because it means dealing with a whole lot of family garbage I’d just assume ignore. It means dealing with how my family has responded to HPS. It means talking to all the potential parties and explaining to them why I’ve made the decisions I’ve made. And it means thinking about all that scary HPS stuff I’d jus

It’s been quite the couple of days. As anyone who knows me will tell you, housekeeping is not my strong suit. It isn’t that I can’t do it. It’s that I hate doing it. And, it’s that I find it really difficult to get worked up about dusting when it feels like I have so many more important things to do. Housekeeping always falls to the bottom of my list until things get so bad that I just can’t stand it and then suddenly it’s a crisis. Well, we’re at crisis level now. So, Sunday I decided I’d at least get one entire room clean from top to bottom, even cleaning out some drawers along the way. I have the Heather method of cleaning. After you pass the first step (ignoring the issue all together) you start cleaning at the top and work your way down – the theory being you’ll likely knock a little dust down along the way that can be vacuumed up in the end. So, I was cleaning the ceiling fan, the vent, dusting some of the frames of things hanging in my bedroom, and then I decided to dust the bli

Hey gang, This is the latest from the Genetic Alliance on GINA. I meant to post it yesterday but I was having technology issues. The Senate may consider the Genetic Information Nondiscrimination Act (GINA) this week! This legislation provides fundamental protections against the misuse of genetic information in health insurance and employment decisions. We need your support to make sure GINA is successful. Take action in four easy steps: 1) Call Senator Reid at 202.224.3542 and thank him for his support of GINA. Sample script My name is (YOUR NAME) and I am calling to thank Senator Reid for his leadership on the Genetic Information Nondiscrimination Act, or GINA. I would like to encourage him to take swift action to ensure GINAÕs success. T hank you! 2) Call your two senators and ask them to support GINA. You can find their names and contact information at http://geneticallia nce.org/senator. list Sample script My name is (YOUR NAME) and I am a constituent of (NAME OF SENATOR). I am ca

Janet's lung transplant didn't take place today after all. It turned out that when the new set of lungs arrived, they weren't in good enough shape to be transplanted. Everyone please keep the prayers coming for Janet and her family. As you can imagine this is such an emotional rollercoaster! But, sometimes these things happen when you're waiting for a transplant. Sometimes you can have a few false alarms like this before everything works out. Janet is on the top of the lung transplant list. Lets do whatever we can to help her hang in there and wait some more. I know she's ready to have this surgery behind her! And next year, at the HPS Conference, she'll be our transplant superstar!

Everyone please send some prayers and good thoughts up for Janet! She got the call early this morning that lungs were available for her and she's hopefully in surgery right now getting her new lungs! Sometimes patients get the transplant call, and when they arrive the lungs are either not usuable, or they were the back up person, or something like that. So far we haven't heard anything like she's on her way back home, so hopefully all is going well. Transplant surgery is also risky, as is the post operation period when your body might decide to reject the lungs. It will probably be a while before we know how things are going. Her family is in for a very long few days, and calling the Network probably won't be top on their list of things to worry about. But I'm sure that when Janet is feeling better, she'll call. So, please keep Janet and her family in your prayers!

I am very sorry to say that we're well on our way to identifying the next 100 HPS'ers. While I know that it's best for people to know if they have HPS, I do feel badly every time we find a new person. Since conference we've added two new HPS'ers to the patient registry. So, we're at 98 on the Hundred People Search.

Here's the article that appeared in their local paper. Brothers face rare genetic disease 4/13/2008 Greens to take part in federal study of HPS By Dariush Shafa Messenger-Inquirer Todd and Ethan Green now have one more thing in common. Within the last few weeks, the brothers have learned that they have Hermansky-Pudlak Syndrome, a rare genetic disease that researchers are trying to learn more about. Soon, they will be going to the National Institutes of Health in Bethesda, Md., to be part of a study that seeks to find out more about it. The disease also could spell trouble for the brothers, since studies have found that nearly three-quarters of people diagnosed with the HPS die from health problems related to it. "I'm pretty scared about it because of all the things they say could happen to me," said Todd Green, 21. "It can happen all of the sudden." However, scared or not, the brothers say they don't anticipate much of a change in their lives. "I&#

This is from NOAH. I apologize for the repeat if you read this blog on the NOAH site - but as most of my readers read directly from the blog, and many live in the New York area, I thought I'd pick this up from the NOAH Desk because I thought some of you would be interested. Here ya go! From the Desk of NOAH Albinism Documentary, 'Butterfly', showing in NYC Directed by Yulia Mahr, 'Butterfly" is short documentary about a young Scottish swimmer with albinism called Gemma Sherry. The film is showing as part of a series of shorts called All Truisms. Tickets and more information about this film are available through the Tribeca website .This film will be showing in competition at the Tribeca Film Festival in New York in the coming weeks. The screening times are: April 24th 4pm (AMC Village VII) April 26th 12.00pm (AMC Village VII) April 29th 7.30pm (AMC 19th Street East) May 1st 5pm (Village East Cinemas) May 4th 1pm (Village East Cinemas) 'Butterfly' was nomina

This evening I went to a fundraiser dinner for the local chapter of the Lions Club. Yep, I go to a lot of fundraisers, and they aren’t all just for HPS – grin. This one was your standard spaghetti dinner fundraiser. You paid $5.00 at the door, got a plate of spaghetti, a piece of bread and a salad and then went and found your place in the church’s common hall to eat. Desserts cost extra. There was also a silent auction and I went home happy as a clam with gift certificates from MiRachito, my favorite local Mexican restaurant. As I looked around at all those gold and purple vests though, I couldn’t help but think of my grandpa. He was a Lion for years and years and years. The Lions Clubs help to raise money for charities that relate to helping the visually impaired or preventing blindness. I can remember in college thinking it was so cheesy that my grandpa wanted me to come and speak to his Lions Club. I couldn’t imagine what the average college freshman could possibly have to say that

As many of you know the HPS Network is one of the charities you can support at http://www.goodsearch.com/ . Currently Goodsearch is having a video contest. The Tillmans put together the following entry from some video clips we were shooting for later use in promotions. I'm STILL unable to post video from YouTube, but please go check out the link. (And give us a good rating) http://uk.youtube.com/watch?v=2bohiCR4s6o

From left to right: Victor, Izzy's partner, Izzy, Nancy's husband, Nancy, Carmen, and Fankie, Carmen's husband. I'm getting a bit mixed up as to who sent me which photos - but since Frankie is in this pic, it must have been Tommy Tillman that took it. Thanks Tommy!

I know I haven't posted about the Genetic Non-Discrimination Act in a while. So far it's status quo - as far as I know. But, I did run across this article that I thought was a pretty good discription of the problem. The thing about the Hermansky-Pudlak Syndrome type of albinism is that genetic testing is only commercially available for two types. Some of the get-arounds discussed here aren't even options (even if they're bad ones) for our patients. We have to create a medical paper trail to get diagnosed. Life Without GINA Coping with fears of genetic discrimination leads some people to take matters into their own hands. By Rachel Mahan , posted April 4th, 2008. Dennis Pollock has not gone so far as to tell his children to lie—if they are asked about their family history, they have to say that they are carriers for a genetic disease nicknamed alpha-1. But Pollock says there is no need to volunteer the information. He is worried that their insurance companies or future e

Dr. Seward is not only a member of the HPS Network board of directors as well as our scientific advisory board, he's the only doctor in the country that has a private practice treating patients with HPS. He has, I think, 45 HPS patients. While it's much better to develop your own team of doctors close to home that know you in an emergecy, Dr. Seward can be very helpful to consult with when no one knows what to do, or you just want to double check that you're on the right track. I think it's really neat that Dr. Seward brings his children to the banquet every year. It gives them a chance to see how important their daddy is to us.

You know you've been coming to the same hotel for a long time when the guy at the assistance desk remembers your attendees by name and upon not seeing them, makes a point to ask me where they are. He really missed those of you that took the tour last year. He remembered you all!

You've got to have a sense of humor about HPS. Here are a few things I heard lately that made me laugh. "You all said at conference that HPS stood for Hundred Person Search - well, I know what really stands for - hyper pooping system." A woman with HPS called me this week to brag that she'd been to COSCO and had managed to get a pack of 76 super, ultra thick, overnight maxi pads. "They were already marked down and then I had a coupon. Then I got in line and the lady in front of me gave me her coupon so I can go back again!" Only a woman with HPS would be so excited about this shopping coup to run home and call a girlfriend. And only a girlfriend with HPS wouldn't think she was nuts.

I was dying to meet Veronica at conference, and barely even got to have a conversation with her! Everything was so busy! But, I really like this photo!

Here's a picture of Marisol, Elise from Florida, and Elsie from New Jersey - HPS'ers all.

Okay, need to post something for the trial records - I ITCH!!! I have been itching all day. Head to toe! I even have hives in my hair. It must be spring. It is rather dry here too, so I guess I'm going to go home and lather up with lotion - the good kind not the smelly kind. I've been stiff all day and my joints have mildly ached. And boy have I been tired. I didn't sleep well last night and I don't know why. It wasn't because I wasn't tired. I felt like I napped through the night in half hour peices instead of really sleeping. Since the hives thing was an issue last year, thought it important to make a note of it. All I want to do is find a tree somewhere and rub up and down against it like an animal! Itching can make you crazy!

Dr. White poses with Carmen Camacho and Nancy Lee, board members of the HPS Network. Our first scientific speaker on Sunday was Dr. James White from the University of Minnesota. If you’ve been diagnosed with Hermansky-Pudlak Syndrome, chances are at some stage your platelets were under Dr. White’s electron microscope. Dr. White developed the gold standard test for diagnosing HPS by looking for an absence of delta dense bodies under the electron microscope, a very special and highly powerful microscope. An electron microscope uses electrons to illuminate a specimen instead of light. This allows researchers to achieve much greater magnification of the object being studied. Dr. White began studying blood platelets in 1958. He soon met Dr. Witkop, another researcher at the University of Minnesota studying albinism. Dr. Witkop asked Dr. White if he’d mind looking at some hair bulbs taken from patients with albinism under the electron microscope. Dr. White agreed, but asked if in return, Dr

This is Joey! (Sorry about the red-eye Joey, I couldn't get it out.) Joey's parents are on the HPS board of directors - they were part of the first set of families that formed the HPS Network 15 years ago.

It's Izzy, another member of the HPS Network board of directors - thanks Frankie for the pic!

U.S. Representatives Edolphus Towns and Cliff Stearns Introduce Pedestrian Safety Enhancement Act 4/9/2008 FOR IMMEDIATE RELEASE CONTACT:Christopher S. Danielsen Public Relations Specialist National Federation of the Blind(410) 659-9314, extension 2330(410) 262-1281 (Cell) cdanielsen@nfb.org U.S. Representatives Edolphus Towns and Cliff StearnsIntroduce Pedestrian Safety Enhancement Act National Federation of the Blind Applauds Measure to Protect Lives and Preserve Independence of Blind Americans Washington, DC (April 9, 2008): Representatives Edolphus “Ed” Towns (D-NY) and Cliff Stearns (R-FL) today introduced a bill intended to protect the blind and other pedestrians from injury or death as a result of silent vehicle technology. The Pedestrian Safety Enhancement Act of 2008 requires the Secretary of Transportation to conduct a study on how to protect the blind and others from being injured or killed by vehicles using hybrid, electric, and other silent engine technologies. Because bli

Just a little news tidbit I thought blog readers might find interesting. 'Cooking Without Looking' show caters to visually impaired chefs Associated Press - April 5, 2008 8:14 AM ET FORT LAUDERDALE, Fla. (AP) - Lesson Number 1 on a South Florida television cooking show? Use what you have, find substitutes for what you don't. Except host Celia Chacon's isn't just talking ingredients. She's teaching viewers to use touch, smell and sound instead of sight. That's because, like Chacon, most of her audience is blind or visually impaired. Creator and executive producer Ren'ee Rentmeester came up with the idea for the show while perusing Web communities run by the visually impaired. She noticed that the most popular discussion threads were about cooking and thought it would be a cook idea for a TV show. But after two seasons on public television, "Cooking Without Looking" faces an uncertain future after budget cuts at Florida's Division of Blind Se

One of the newest members of the HPS family!

Pictured here are Yaritza (sp?) and Todd - two new HPS'ers - and their moms. Yaritza is young, but already has some of the lung issues and is in the Pirfenidone trial. I told her we were "pill sisters." Todd is young also, only 21, and just recently found out he has HPS. We all know how overwhelming that can be!

Time to post a little update for my records. Grin. As many of you know I was having a lot of trouble before conference with a bad cold. I was really worried that I’d go to conference, get worn down, and make myself sick again. Interestingly enough, my energy levels have been much, much better these past few weeks. While conference was exhausting, it was a normal kind of exhausting. I came back and while I’m still taking naps in the evening (which I don’t like) at least I’ve been very awake, alert and on task at work. I’ve actually been feeling pretty great. Yesterday, however, I ended up staying home (and trying to work as I could.) I haven’t had any GI issues in some time, but I guess whatever I ate for dinner Monday night didn’t agree with me. It was like a volcano exploding over and over again. And when you have an ostomy, and you get the runs shall we say, it’s very easy for leaks to occur. And they did. Over and over. This, of course, irritated the two little bleeding areas around

Dr. Markello and Dr. Young have a nice chat.

I'm still having all sorts of trouble with YouTube and I can't get the video to post. I want you all to be able to hear it, so go to this link to check it out. http://www.youtube.com/watch?v=diruVJ8TtjQ

Many of us in the HPS community are big fans of Angels in Voice, the singing duet of Candice and Crystal Sipe. Candice and Crystal are a real part of HPS history. In the beginning, before there were research protocols underway at the NIH, Donna and Ashley traveled to the NIH every two months for two years. The doctors studied Ashley to determine if HPS was a disorder they could learn enough from to make a difference, and to make it worth spending millions on research. At the end of those two years Dr. Gahl decided that HPS was a great disease to study because it could teach medicine so much about albinism, vision problems, bleeding problems, digestive problems and lung problems. The NIH could get a lot of bang for its buck by studying HPS. And so before the natural history study was launched, HPS was featured at NIH Grand Rounds. Donna asked if we could have a few minutes before the scientific session got underway. They allowed it, and Candice and Crystal sang the song I’ll post in a v