Living on the frontlines

I'm making a post office run today which means I was just packing up a box of pop tops I've collected. I thought it would be a good time to post a reminder. The Tillman family is collecting pop tops as a fundraiser for Hermansky-Pudlak Syndrome. Karen is working with her sister's school, and one kid brought in 8,000 pop tops! The tops are being turned in for recycling and the money is going to the Network. It's all of these efforts that add up for the Network. If you'd like to send your pop tops to Karen (if you've got enough to make it worth the postage) send them to: The Tillmans 4114 Landerwood Dr. Greensboro NC 27405

This morning Sheena, well-known in the HPS community as a great friend, source of support and an all around inspiration, lost her dear brother Kirk. Kirk was 37 years old. Sheena and Kirk are examples of just how much work is still to be done by science. They tested negative for HPS, however, they had so many similar issues that they fit into the HPS fold very well. When it comes down to it, when you’re sharing life experiences, especially experiences coping with health issues, who really cares which gene caused the issue. It’s important for science, but not so important for moral support. Sheena has been very active on the HPS Yahoo group and we all love her like a sister. But none of us could ever be Kirk. There’s a special bond that siblings can share. Sheena and Kirk have battled a lifetime of immune system problems, GI problems, bleeding problems etc together. Both have spent large parts of their lives in hospitals. Both are survivors of the highest order. Kirk was an inspiring bi

The Hermansky-Pudlak Syndrome Network continues its outreach efforts this week in Philadelphia at the national meeting of the American College of Chest Physicians meeting known as CHEST. The HPS team continues to man a booth on the trade show floor to build awareness and answer questions from physicians. This morning Donna Appell, President and Founder of the HPS Network, delivered an educational session at a nearby meeting of the American Academy of Critical Care Nurses. This afternoon the HPS team delivered an educational talk about HPS to interested professionals at Temple University.

Stress, illness, drugs, exhaustion – who knows why, but I think my brain has left the building. I just don’t feel like I’m all there. It seems to be taking me a bit to process things. Yesterday this problem was especially bad. I had a horrible GI day yesterday, worse than I’ve had in quite a little while. I had constant runs, cramps, bad lower back pain and bad joint pain – and I’m still fighting the sinus stuff. I just felt miserable all over and spent the gret part of the day sleeping or listening to the news on the radio. Then this morning it all made sense. My little monthly visitor showed up. I guess it forgot about the IUD. Today my GI issues are better, but my bleeding isn’t. But, as long as this issue is short-lived, it’s still better than before the IUD. I just get so impatient and frustrated when I can’t get done the things I want to get done. You’d think being off work I wouldn’t feel that way – but I do. I hate not feeling like I’m accomplishing anything.

When did I ever have time to have a full-time job? When I first asked for disability leave everyone advised me to not worry about the long-term plan, to just do nothing but rest for two weeks. I won’t argue that I need two weeks of rest – but I’m still waiting for them to start. I spent all of last week either turning over projects from work, or on the phone/computer with various social service agencies trying to get all of this paperwork processed. I’m taking a shotgun approach – apply for everything and see what happens. I have a feeling I’ll get to repeat the entire process in another month. I was just over the income limit for several programs because I made a regular salary the first part of Oct. By the end of November, that won’t be a problem. As for my health, I can say I’m doing better. It took about five days, but my blood pressure has stabilized and is in the normal range. Same with my heart rate. I am still, however, having bad acid reflux, the runs, tummy cramps, some joint

This evening I talked to Donna, and Nancy posted to the list. It sounds like CHEST is going very well. This morning Nancy and Donna gave a presentation about HPS to the local services for the blind office – three people at the talk seemed to have HPS symptoms and will now be tested. We hope they test negative, but if not, we’re glad we found them. Dr. Markello presented data from the HPS natural history study about the lung disease of HPS – pulmonary fibrosis – and everyone says his talk went very well and was very well received. So far, it sounds like the conference has been a success.

Tengo buenas noticias que compartir a pesar de los inconvenientes experimentados en los vuelos de/para San Juan-Puerto Rico.United Airlines ha restablecido sus vuelos sin escala que han estado utilizando nuestros pacientes. Así que por el momento ya no van haber los problemas que estuvieron experimentando nuestros pacientes en el mes de octubre debido a retrasos por escalas en Miami. (Esto fue debido a que tuvimos que cambiar nuestros pacientes a American Airlines debido a los inconvenientes que estaba confrontando United Airlines)De otra parte esto también aliviara cualquier problema de oxigeno ya previsto, de los cuales iban a presentarse bastantes, aunque solo se viera envuelto un paciente!!!! Debido a que cualquier paciente que sufra el retraso de su vuelo (en cualquier aeropuerto), limitara su accesibilidad a un suministrador de oxigeno y la renta de un equipo como este se encuentra cerca de los $300.00 por hora. Lo que ascendería a $600.00 ida y vuelta por un retraso de vuelo en

This next week the HPS Network will be undertaking a major outreach initiative in the Philadelphia area. The Network will have a booth on the show floor at CHEST – the meeting of the American College of Chest Physicians, Oct. 25 = 28, 2008. Booth staff will work to answer questions from physicians about Hermansky-Pudlak Syndrome as well as generate awareness among the event’s attendees. The HPS Network will also be speaking at a number of Philadelphia area social service agencies serving the blind and hospitals to generate greater awareness of HPS among social workers, clients and medical staff that are most likely to encounter patients with HPS. Anyone who would like to arrange an educational session for their group, or would like to arrange to speak with representatives of the HPS Network in person, should contact the Network’s national office at 1 (800) 789-9HPS. The Network will be in the Philadelphia area again in November for a national genetics conference. Several researchers fr

I got a message from Jose from the NIH. I know he sent it out to those of us with e-mail, but if you're in contact with any of the HPS'ers on an NIH protocol that aren't online, would you please help to pass the message along. Dear All, I have good news to share regarding the “non-stop” flight from/to San Juan , Puerto Rico- As of Nov 1st, United Airlines has re-instated their non-stop flight that our patients had been using and have become accustomed to. For now, there will no longer be any problems with layovers in Miami that the patients had been experiencing throughout the month of October (and the fact that we had to switch them all to American Airlines which caused this layover). This will also alleviate any foreseen oxygen problems...and there were going to be many, even if it would only have involved one patient!! Because of the fact that any patient having a layover (at any airport) would entail going through an oxygen supplier and renting a portable oxygen tank/

Please say some prayers for Sheena, her brother and their family. Sheena had posted a while back that her brother was sick again in the hospital. He's been through so much - no human being should have to endure so much. Sheena's brother is very ill, and Sheena's just not up to answering everyone's questions and getting into details and getting a zillion e-mails. She and the family are just trying to take care of her brother right now. It's been tough. It's hard to be so far away when someone you feel is like family is going through such a tough time. I wish I could hop on a plane and fly to Canada to do whatever - be a friend, cook dinner, clean house - whatever. But all I can do is say prayers here in Kansas.

This week we added two new HPS'ers to the HPS family and patient registry. That puts us at 49, over the halfway mark. But, we've only got about a third of the year left before the next conference. We can't let our guard down on outreach. It's our hope that early intervention will help HPS'ers live long and happy lives because they'll have access to preventative care and the latest research.

Congrads to the team that worked all weekend last weekend at the Oysterfest in Oyster Bay, Long Island. It's very hard work - I know - I worked it several years ago. But, the hard work paid off. We don't have the final figures in, but we think it was the most successful Oysterfest fundraiser we've had so far. And a special thanks to Lisa for sending me some photos to share!!!!

This past week we lost a major figure in the HPS community, Aurora (pictured here in the middle). Aurora attended her first HPS conference last year. She did more for the HPS community than I think she ever knew. She was such a source of hope to so many, especially the younger people with HPS. Aurora passed away at 74 years of age. It's never easy to lose someone, no matter how old they are. But to a community of people that often question whether they'll ever reach retirement age, Aurora's story meant a lot. Aurora didn't speak English and thus her daughter Fran joined the HPS adults listserv. It's a group typically kept to just those with HPS, but Aurora wanted to know what was going on, and so she participated through Fran. Besides, our family listserv right now is mostly parents and we didn't think Fran would find the kind of support she needed there either. Fran has been such a great addition to our list sharing stories about her mom, keeping us posted on

A few weeks ago one of the HPS moms who has a daughter adopted from India forwarded me a contact in India. It turns out one of his friends had been diagnosed with HPS and was struggling with pulmonary fibrosis. Unfortunately, there was little help that we could offer. He was too ill, and too far away, to try for one of the NIH trials. Although he was never able to officially join the network, I've followed his story through his friends. I'm sorry to say that this past week Santosh passed away. Even though I never knew him, I feel the loss of his friends. I know what it's like to lose a friend. And, although no one else in HPSland besides this mom and myself ever really knew about him even, I feel it's important to honor him as part of the HPS story. Santosh had many friends with albinism in India. He seems to have been very well liked and respected. Thus, his life and story was known and felt by many others in India with albinism. Perhaps his story will have generated e

For those following this issue, I thought you might find the following story, well, horrifying. Published on Taipei Times http://www.taipeitimes.com/News/world/archives/2008/10/19/2003426387 Burundi albinos hide in fear of witchcraft AFP, RUYIGI, BURUNDI Sunday, Oct 19, 2008, Page 6 Richard Ciza, top left, 19, and Francine, second right, 14, wait in the courtyard of a home in the eastern Burundian town of Ruyigi on Wednesday last week. They and other albinos have recently sought refuge after two albinos were recently killed and dismembered in what are believed to be ritual killings. The 19-year-old is an albino and knows exactly what kind of death he would have suffered if the hunters had caught up with him. “Some neighbors came to warn me that a group of killers was after me and so I ran like the wind, completely terrified,” said Ciza, who lives in Ruyigi Province.In recent weeks, Ruyigi has seen a gruesome string of murders and mutilations of albinos, whose body parts are sold to wit

A happy story appeared on my google alerts today concerning albinism in Tanzania. A group of people with albinism have formed a soccer team to have a little fun and help educate the public about albinism. Here's a link to the story: http://africanchapter.blogspot.com/2008/10/albino-magic-team-formed-in-tanzania.html

My friends in HPSland know I've been down lately. Besides all the help and support they've offered, they've been sending me things to make me laugh. This is another one that came from Ana. I thought it was funny, but maybe Ana and I share the same sick sense of humor! Grin! The owner of a drug store walks in to find a guy leaning heavily against a wall. The owner asks the clerk, "What's with that guy over there by the wall?" The clerk says, "Well, he came in here this morning to get something for his cough. I couldn't find the cough syrup, so I gave him an entire bottle of laxative." The owner says, "You idiot You can't treat a cough with laxatives." The clerk says, "Oh yeah? Look at him, he's afraid to cough."

Pirfenidone, the drug that is currently being studied at the NIH to treat the pulmonary fibrosis of Hermansky-Pudlak Syndrome, has been approved for IPF by the Japanese version of the FDA. I can't help but think that this will only help us get it approved here. (For friends and family, the drug trial I'm in is for this drug.) DGNews Pirfenidone Approved in Japan for Treatment of Idiopathic Pulmonary Fibrosis NEW YORK -- October 16, 2008 -- The Japanese Ministry of Health, Labor and Welfare (MHLW) has approved pirfenidone for the treatment of patients with idiopathic pulmonary fibrosis (IPF) in Japan. The approval is based on the results of 2 randomised, double-blind, placebo-controlled, phase 3 studies. The Clinical Studies Assessing Pirfenidone in IPF: Research of Efficacy and Safety Outcomes (CAPACITY) trials included 779 patients with IPF at 110 centres in the US, Europe, and Australia. The primary endpoint in CAPACITY was change in Forced Vital Capacity (FVC) from baseline

The following article about the OysterFest was in New York's Newsday - HPS got a mention. Yeah! Might be nice to drop the author a thank you note. Newsday.com Oyster Bay's Oyster Festival benefits nonprofits BY SUSANA ENRIQUEZ susana.enriquez@newsday.com October 17, 2008 For two dozen nonprofit organizations in Oyster Bay, one weekend of bivalve festivities at the hamlet's waterfront is their livelihood.In its 25th year, this weekend's Oyster Festival is benefiting more people than ever, from preschoolers to seniors. "It's a bigger and better festival every year," said Tom Reardon, founder of the festival running today through Sunday. When the idea for the festival was conceived in the 1970s, the food court could have gone to for-profit vendors who would pay for their booths. But Reardon said he and his fellow founders had another idea: open the food court to nonprofits so they could earn money for their causes. "It was a selfish kind of thing,"

Today the HPS team on Long Island has spent the day hawking fried chicken, ribs and other sorts of versions of heart-attack-on-a-plate at the Oysterfest! Let's all say a prayer for them - the last day is tomrrow. I've done the Oysterfest, and it's grueling work. Pray that they made lots of money - we really need the revenue for conference. We've got $40,000 left to raise to even think about having a conference anywhere close to the size of last year.

Here's the update for the week - we added one new HPS'er to the registry. So, we've got 51 more to find to meet our outreach goal for the year - on the verge of halfway! And just to show you how the success of outreach efforts aren't always felt immediately, our new HPS'er lives on the mainland USA - but was referred to us after her mother learned of the HPS Network through publicity in Puerto Rico. So, kudos to HPS Puerto Rico!

Well, It happened. I jumped off the cliff, sort of speak. I’ve asked to be placed on short-term disability leave, and given the nature of things at work, I don’t think I’m going back. As usual, I’m being a bit selective about what I blog about in this situation. I’m hoping to come to an agreeable solution for everyone involved and I wouldn’t mind, one day, freelancing for my employer. I’ve covered my industry for 10 years plus and have a lot of contacts. The whole situation seems surreal. One minute I feel such a great sense of relief that this saga is over. I don’t have to go back. I don’t have to live in fear anymore. I don’t have to work my butt off only to feel as though I’m falling short and not cutting the mustard. I don’t have to worry about how my health issues are affecting my co-workers. It feels like a giant weight has been taken off my shoulders and I can start to heal up a bit – physically and emotionally – and figure out what to do with the rest of my life. On the other h

Boy do I have a lot to blog about - but I can't right now. Because of everything going on with me, I just wanted to post quickly to let you all know I'm okay. I had a very rough day yesterday. We had an HPS board call last night, and then I went to bed. I was up several times in the night feeling sick with acid reflux etc. Today is deadline day and I'm at home - I just couldn't do another day with my heart rate and blood pressure bouncing all over the place. Anyway - I did make some headway yesterday - I'm okay today, just very tired - and I'll post more when I can.

Today I recieved this e-mail from Friends of the Clinical Center - a non-profit that tries to help patients at the Clinical Center at NIH with unexpected issues that come up and can't be paid for by the usual government funding. They need some help this weekend - I know several readers are local to the area - if anyone has free time and thinks they could help, here's the info and contact. Hello dear FOCC Volunteers, We are having the Bethesda Row Arts Festival this coming weekend – Sat. Oct. 18 and Sunday Oct. 19th. I am looking for a few volunteers to come help run the Spin art table. It is quite fun and raises money for our charities. Please let me know if you can come by for a couple of hours either day. The hours are 10:30 am – to help set-up-to 6pm. I will be there to guide you through the activity. Look forward to seeing you! Heidi Heidi S. Grolig Executive Director Friends of The Clinical Center, NIH Charities Office: 301-402-0193 Mobile: 301-938-4777 Fax: 301-480-4417

A friend told me today that depression can make you cranky – boy does that explain a lot. I can usually be hugely patient with people, but right now I feel like I want to bite someone’s head off for the smallest things. You’d think I was on Prednisone, although I’m not. I’m just, well use a polite word instead of the one that comes to mind first that starts with a “b” – cranky. I feel all out of whack. Last night, although I was exhausted and sleepy, I couldn’t sleep. I know I didn’t drift off until sometime after 3:00 am. My mind was like a radio that changed stations every few minutes and was lacking an off switch. It just wouldn’t settle. So, of course I felt crappy this morning. I’m trying to work out all this stuff right now and it’s hard when you’re working in a cube farm. So, since they told me I could work from home (although I’ve received no specific instructions on that yet), I took them up on it today so I could make some calls. Now, I’m going to be working all night to make

I have been so touched by the many e-mails and offers of love and support you all have offered during the last week. I'm blown away. I do want to clarify something though. Some of you are worried that I'm choosing HPS over a worklife. You all have been very worried about that. I love you guys, but I'm not stupid. I well aware of the need to keep a roof over my head. What I meant by what I said was this. It has been suggested by several people that I take a sabbadical from the HPS world, resign from the board etc. There is no way that doing those things would help this situation. In fact, I believe it would make this worse. Besides the fact that I love my HPS friends and I could never just sort of turn you all off, I too have this gene. No matter how well I'm doing, I could never "forget" about it. It's there, like a little time bomb just waiting to go off. It affects my brother as well. I have no power over that. The only way I can stay sane is to keep doi

Are you looking for a little entertainment in the New York, Long Island area? Then come out to OysterFest and enjoy one of the East Coast's biggest festivals. When you get hungry, look for the Hermansky-Pudlak Syndrome booth and buy your goodies from us. Help us raise money to fight HPS and find the CURE! Here's a little write-up from the Oysterfest Web site: 25 Years of Attractions, Food and Entertainment for the Entire Family We’ll see you at the Festival -October 17, 18 and 19 The Bank of America's 25th Anniversary Oyster Festival, presented by Newsday and sponsored by the Oyster Bay Rotary Club, is one of the East Coast's largest annual waterfront festivals. A major fund-raising event for local charities, the celebration returns to Long Island's north shore October 17, 18 and 19 for its 25th year delivering its trademark mixture of new activities and fabulous food. Now THAT’S entertainment!

Ana sent this to me to cheer me up - thought that since I've been so depressing, you all might want to see it too.

This past week has been a very tough week – well, it’s been a tough few months to be honest, but this last week it’s as if things came to a head. The regular readers of this blog are like family. I wish I could share with all of you the entire picture of what’s going on, but right now the timing isn’t right for that. Many of you have e-mailed me privately to ask what’s going on as you’ve noticed here, on the listserv and on facebook, I haven’t been myself. If you ask me privately, I’ll share with you what’s going on. I just can’t put it out in the public quite yet. But I can tell you part of the story. Wednesday, I think, I went to the doctor about my acid reflux, as well as all the other stuff going on with me like the almost constant headache I’ve had for weeks now, the blood pressure that seems to think it belongs on a roller coaster, the runs that I now have more often than not etc. These are all symptoms of stress, I believe, and not HPS. But, they sure has heck are not helpful to

This week is a record since we started the 100 People Search campaign last March. This week we added 14 people to the registry at the Hermansky-Pudlak Syndrome Network. I want to send a kudos out to Hilda - 11 of those were found because Hilda traveled around the island of Puerto Rico following up on leads and knocking on doors. That puts us at 52 more to find on the 100 People Search. Everyone - reach out to your families, extended families, churches, community centers etc. Let's find them!

A few posts ago I posted a story about a ministry group trying to help people with albinism in Uganda. I knew someone out there would help me out and look them up. Karen got in touch with her church and their global ministries department, and here's what she found out. Thanks Karen! Hi Karen! I'm Pastor Lynn Everswick's administrative assistant. I'll make sure that he sees your email regarding Every Child Ministries. Unfortunately, it's getting close to Fall Global Celebration, so it might be awhile before he sees it, so I've done a little digging around to check ECM out. Lori Lewey has a reference book of Evangelical missions agencies, and ECM is listed there as having been founded in 1985. So they are a recognized group, and they've been around for over 20 years. One thing we always look for is membership in the Evangelical Council for Financial Accountability (ECFA). ECFA holds ministries accountable for how they use money donated to them. Every Chil

This afternoon I recieved this update from Under the Same Sun. Those of you that have signed the petition I'm sure got the same update. Yesterday there were several media reports, but I was short on time and couldn't get them posted. But, here's the update - please do you what you can to increase the number of signers to the petition. More than 4,000 is a good start, but it's just that - a start. Dear Heather Kirkwood, You are receiving this email because you signed the petition related to albinism in Tanzania on our website: www.UnderTheSameSun.com Thank you - we sincerely appreciate your support. Sadly I have more disturbing news to share with you - the killings are continuing and spreading, now beyond Tanzanian borders. Last week it was reported by BBC World News that three more persons with albinism had been brutally murdered - this time in the neighboring country of Burundi. One of the victims was a teenage girl – her limbs and tongue hacked off for eventual sale b

This came across my google alerts this morning. I haven't had a chance to check this group out, but I thought many of you would be interested and might be willing to check them out for me. Let me know what you find out. Christian ministry brings hope to Albino children in Uganda In Uganda, people believe that an albino child is a curse on the family, reports MNN . People with albinism inherit a combination of recessive genes that causes a lack of melanin pigment in the skin, hair and eyes. This allows their eyes to be easily damaged and their skin to be unusually susceptible to skin cancer when exposed to sunlight. Because of their appearance, their communities often shun them, or worse. Ritual killings of persons with albinism are a growing into a crisis in East Africa. The problem has grown so much that a regional body, the pan African Albinism Association formed this May, to address the rights of persons with Albinism. Reaching out to the children who struggle with the condition

It couldn't have happened at a worse time, but I missed work on Friday. As I've been saying lately, I'm having a LOT of acid reflux lately. It happens at night, but during the day too. For the last week I've also had an almost non-stop headache. My blood pressure, mostly, is high but not scary high - although with the meds I'm taking it shouldn't be high at all. Thursday my headache was particularly horrible. It felt all day as though someone was squeezing my head. Tylenol didn't even begin to touch it. Finally, at 2:00 am I gave in and took an Oxycodone - I almost never do this but I hadn't slept in so long and I was so miserable. It helped. The headache went away and I slept like a babe - right through my alarm. I decided to h.e.double hockey sticks with it. I tried to work from home but was only partly successful because the headache was back. It wasn't a good day at all. I've had the runs, acid reflux, joint pain, and this killer headache for

This has just not been my week, okay, maybe not even my month. Friday I had an “HPS experience” that isn’t for the weak of stomach – so if you’re eating, probably not the time to read this post. Friday I had an appointment after work. After the appointment I went to Michaels. Usually Michaels has a therapeutic effect on me. I love the smell of craft stores and I love just walking up and down the aisles imaging all the things I could create. It’s a dangerous thing as sometimes my creativity is bigger than my wallet and I can get easily carried away. Well, I must be truly depressed because I got of Michaels and only spent $8.00. I think that’s one for the history books! As I walked through Michaels I got to feeling a bit dizzy. My blood pressure has been a bit wonky. I’ve had a killer headache for days and days. The acid reflux has been horrible lately. (I think these are all symptoms of stress and not HPS this time around.) It dawned on me that while I bought lunch, I never really ate m

I am sorry to share with blog readers that Melanie, one of our newer HPS’ers, passed away this past week. I’m so sorry I haven’t posted sooner to let you know, but to be honest, it’s been a very emotional week and I’ve had a hard time doing a lot of things. Melanie lived past her 26th birthday by one day. Only a few weeks ago she was diagnosed with HPS. As it turned out, her lungs were already quite sick. She was a fighter though. I can’t help but remember how hard it was to learn that I had HPS in the beginning, and I wasn’t yet very ill. It took some time to adjust, to learn, to gain some perspective. Melanie and her family had a crash course. Melanie told her friends, according to a post from her brother, “Doctors told me my only chance I will have is to receive a lung transplant and to be on 24 hour oxygen at home. This condition is rare enough where only 1 of every 100 doctors has ever heard of it yet it is so prevalent in Puerto Ricans that 1 out of every 21 carries it.” How insi

So often there is so much going on in my head, in my life, in HPSland that I wish I could share with everyone – but I can’t. I must tuck these little tidbits of my HPS experience away, at least for a while, to protect loved ones, to protect work, to protect the privacy of other HPS’ers etc. But there are days, days like today, when I feel as though I want to shout to the heavens, “You’ve got to be kidding me! How can you expect me to live this way? This is just insanity!” Today was one of those days, and right now I can’t get into all the reasons why. I can say, as I’ve blogged before, that I feel as though I straddle two worlds – the real normal world and the HPS alternate universe. To expect that the two would never collide is crazy. But, we all have to live in the real world. We have to pay real bills and handle real daily activities. We all have our coping strategies. Some are very good at compartmentalizing life and keeping the worlds separate. I am not. I don’t know why. It’s jus

I’m hoping maybe some of my blog readers – some of whom I know are eBay users – might be able to help me out. For the second time I have received an e-mail through eBay about someone upset with me for not sending something they’ve paid for etc. The thing is I’ve never even tried to sell anything on eBay. I don’t think I even have an account with them. A few years ago I was curious and spent a few hours browsing – not sure if I ever actually signed up or not. I’m getting highly annoyed because these are not spam e-mails. They seem to be coming directly from eBay and link back to the eBay site. But try reporting fraud on eBay’s site if you’ve never even been guilty of using it. The security center has a zillion links for identity theft, none of which tell me how to find out if someone is passing themselves off as me on eBay. I really don’t have the time to spend hours trying to figure out how to contact this company and report the situation and make sure my good name is cleared. What if,

This article came across my google alerts. It's a very well done article summarizing the story of what has been happening in Tanzania. It is copyrighted, so I can't repost (well, I could write to get permission, but I'm on deadline so I'm trying to push this out to you all fast.) Here's the link - it's worth the effort to click through to read it. http://tanzania.suite101.com/article.cfm/the_albinism_murders_in_tanzania