Living on the frontlines

I was going through some pics from an earlier Washington trip. I think this is the Jefferson Memorial - someone please correct me if I'm wrong so I can label this pic.

I've had a number of e-mails and phone calls from HPS'ers wanting to know how Melanie is doing. She's still very sick. She's still in the hospital. I really don't know much. I hate to ask her sister what's going on because I'm sure the family is just overwhelmed with caring for Melanie. She'll let us know when she's able. In the meantime, everyone please continue to say some prayers or to help out with Melanie's fund.

I thought I was feeling better over the weekend, but Sunday night the acid reflus wass very bad and making me feel as though I was going to throw up all night. I went to work, but had to come home by noon thanks to a code brown. I'm calling Kevin. This is the worst possible time to be having all these tummy troubles as things are so busy at work. It's so frustrating!!!!

Debbie is feeling much better. She's tapering down on the steroids and is expected to be released from the hospital tomorrow.

Brenda tried, but mission meet Jennifer Lopez was a bust. I happened to be on her official Web site last night reading her blog. She hasn't blogged since August, but I found it interesting that she was blogging about how she was interested in helping in the area of health care disparities. I can't help but think that if she just knew we were out here - if she just understood the health care disparities that affect the Hermansky-Pudlak Syndrome community - and if she just knew that Donna lives right there near her on Long Island, that she would be interested. And, I can't help but think of what an impact that kind of help could have - how many people it would help us to get diagnosed and how much it would help us to raise money to serve our families and to fund research. I went to leave a comment on her blog, but the button wasn't working. If anyone else out there in HPSland should feel so inspired, we'd really appreciate it.

Everyone please say an extra prayer this evening for Brenda, one of our HPS'ers. She's getting up early to go to a department store where Jennifer Lopez is making an appearance. The first 300 people to buy two bottles of mens' fragrance will get a chance to meet Jennifer Lopez. Brenda is going with her HPS t-shirt that says, "Fighting for the cure with every breath" and a fist full of literature. Jennifer Lopez is from New York, but is Puerto Rican. She actually lives in Donna's neighborhood, although we've never been successful contacting her. I'm sure that celebs like her get requests for help all the time, but I can't help but secretly hope that good old Jennifer is looking for a cause that no one else has taken on and one that would have meaning for her Puerto Rican roots. It could mean the difference for a lot of people fighting Hermansky-Pudlak Syndrome. So, we'll keep our fingers crossed and we'll say some prayers this evening. We co

I talked to Debbie this evening. She's getting better - as she says, the elephant she's felt like has been sitting on her chest has gotten up and left. But, she still sounds short of breath on the phone and is still on high doses of steroids. She's going to be in the hospital a few more days. She says hello to everyone!!!

One of the HPS moms has created a team for HPS at a Web site called www.iwon.com . This is a game site. They feature all sorts of online games - word games, puzzles, casino type games etc. (No real money is involved). As you play different games you earn coins - the coins can be used to enter sweepstakes for prizes. If you join a charity team, the coins are also applied to the team total to potentially win $10,000. I will warn you that if you don't want to get a ton of promotional materials, to be sure to check that box when you join. I did, and they haven't pestered me. Karen had joined a few years ago and said it was so bad she had to change her e-mail account info. So, just know that. I personally like the word games. I never have learned to play poker....grin.

Just a reminder - don't forget to sign the petition to help people in Tanzania with albinism. Here's the link just in case you missed it. http://www.underthesamesun.com/petitions.php

This picture is actually from a Washington trip about a year ago. This is Ryan and I at the Rosevelt Memorial - I really like this memorial because it's more like a park than looking at a statue - it's very peaceful. It's the kind of place you could take a picnic and a book and be happy for an afternoon.

I've got to do some homework on this one. She was the only woman out of all 50 states.

This is actually from the Baltimore part of the trip - it's a little lighthouse at the Inner Harbor. It's also an I-love-my-camera shot. I was on the other side of the harbor when I took this. Without the long range lense, I didn't even know the lighthouse was there - I couldn't see it at all.

At one point England had sent one of the original copies of the Magna Carta to Washington. The copy had to return home, but the case built for it is still there in the Capitol.

Each state has a statue of a famous person from there in this room - I took lots of statue pics but I should have written down who was who???

It was sort of cool to see the Rotunda on TV this week - I love seeing places I've been on TV. This is a painting of Pocahantis (sp? pretty sure I slaughtered that) being baptised before her wedding.

I talked to Debbie yesterday, and then didn't feel up to getting on the computer. She does indeed have a lung infection and some inflammation, so they're keeping her a few days and giving her steroids. She already sounds better on the phone. But big mama Heather does worry - what's up with these infections and inflammation every so many months is seems? Take care of yourself Debbie!!!!!

I missed work on Friday. I feel like I've had some sort of bug brewing just below the surface for a while. I threw up right before going to NIH, showed up there with a low grade fever etc. Every since I've been back I've felt completely exhausted and worn out. Sometimes it's hard to tell if that's a mental exhaustion, or a physical one, or both. The low grade fever has been coming and going - and then seemed as though it went. Then Thursday night I was sick to my stomach most of the night. I felt better in the morning, but was so tired and running a temp, so I stayed home. I got pretty sick by the afternoon and seemed to rally sometime last night. I still feel sort of crappy, but better. I've been able to eat and the fever is gone. I do feel very worn out though. We're in the midst of going to press at work and it couldn't be a worse time to be out - but I just feel like a limp noodle.

Please say some prayers for our friend from Florida Debbie. Debbie's been having some trouble breathing lately and this evening was admitted to the hospital. I've talked to her several times this evening. She's in good spirits. They are doing some tests tonight to try to find out what's going on. Even though she's having a hard time breathing, her oxygen levels and blood pressure are good. Pray that she gets some relief and that the doctors get to the bottom of this quickly.

This week we have one new person that has joined the HPS Network. That puts us at 66 on the 100 People Search. Keep up the good work. We need to find people with HPS sooner, before they're very ill.

As many of you know, I have a google alert set up for all sorts of key terms like albinism, pulmonary fibrosis etc. The following was posted on the blog of a friend of Melanie's. Melanie is one of our newest members of the Hermansky-Pudlak Syndrome family. Unfortunately, like so many she didn't know she had HPS and the lung disease sort of snuck up on her. Melanie will be 26 years old next week. Perhaps some of us would like to contribute to the fund set up to help her and her family for her birthday. Here's the post: Melanie Hernandez, beloved sister and daughter to Pete, Monique, Cookie, and Bugie, has been diagnosed with Pulmonary Fibrosis, a lung disease occurring in people with Hermansky-Pudlak Syndrome, a very rare disease.Hermansky-Pudlak Syndrome (“HPS”) is a genetic metabolic disorder. It is characterized by: Albinism, Vision Impairment, Bleeding Disorder, Inflammatory Bowel Disease and Lung Disease – Pulmonary Fibrosis. With the family’s research and the recollect

You’d think given all of the medical hoops I’ve jumped through in life, I’d be a tough cookie. You’d think that, but you’d be wrong. I’m a wimp. Just ask Dr. Merideth. And this week required me to overcome my wimpy self once again and FINALLY get to a dentist. We won’t mention how long it’s been. It’s been even longer than I had thought – and that was a long time. The problem is a few months ago half of one of my teeth just crumbled. It was a baby tooth that in 35 years had never managed to fall out of my head. So, I guess that’s not so bad. The problem is the adult tooth is hidden in the roof of my mouth, dead. It never pushed the baby tooth out. Several years ago I got a long lecture from a dentist about how important this problem was, and how I needed to have the baby tooth pulled, have braces put in (I’ve needed braces since I was a kid) and then have a chain attached to the adult tooth in the roof of my mouth so that eventually the pressure of the moving teeth would somehow bring

Yeah, I thought that headline would get some attention. It’s been busy and crazy as usual, so much so that I’m getting tired of apologizing to all the people I’m not calling back, and for all the projects that remain unfinished because, well, it’s crazy. Sometimes I do get a bit overwhelmed with life. I feel like no matter what I do at work I’m always behind. Everyone keeps saying, “That’s just the way the business is…..” and that’s true. I know. But it’s demoralizing at a certain point. So much needs to be done in HPSland – and while I’d gladly delegate some of this, unfortunately, there are a number of tasks in the functioning of the Network that just can’t be delegated very well. They require some background and understanding that takes time to develop. And then there’s all the HPS’ers I know right now that are sick. I know of four in the hospital off the top of my head who are extremely ill. My heart just aches sometimes at how far we have to go to the cure, and how long it will li

Here's a post for the Kansas City locals - this coming weekend is the Fall Festival near my house. It's usually a lot of fun. Here's the info: Annual Fall Festival & Parade (9/27/2008) The annual Fall Festival, including the Arts and Crafts Fair and the Santa Fe Trail Days Parade, will be held: Saturday, Sept. 27, 2008 9am to 5pm Santa Fe Commons Park, 81st and Santa Fe Drive and 80th Street, between Marty and Santa Fe Drive* Events will take place rain or shine * Food booths, offering everything from lemonade, hotdogs, hamburgers and ice cream, will be available along with craft booths, featuring jewelry, gifts, art work, clothing and more. Fall Festival Parade will begin at 2pm. Music All Day at the Clock Tower! 10am-noon Eddie Delahunt 12:30pm-2pm Valentine and the Ticklers 3pm-5pm The Grand Marquis

One of my "beats" at work involves following what's going on at various convention and visitors bureaus around the country. I know I have a number of regular readers on the East Coast and so I thought some of you might be able to take advantage of some of the deals that will be offered by the CVB in Baltimore. Here's a bit of the story that appeared in the Baltimore Business Journal . Baltimore Area Convention and Visitors Association launching online discount tourism promotion Baltimore Business Journal - by Julekha Dash Staff The city’s tourism agency is launching a new discount program on its Web site aimed at winning travelers who are hurting from a down economy. The Baltimore Area Convention and Visitors Association has created a new online program called “Deal Driver,” which offers coupons that offset the money a visitor would spend on gas to get to Baltimore. Visitors to Baltimore.org enter their zip code to determine how much they would spend on gas. They th

This is a room featuring statues submitted by each state of someone from their state. The room was once a hall where the House, I think, met. There's an old wives tale that back then you could stand in certian parts of the room and overhear conversations from other parts of the room.

This evening I received the following note from my friend Carmen. Carmen is so right. As the 100 People Search continues to try to help people with Hermansky - Pudlak Syndrome, sometimes we find people that have such advanced disease there isn't much we can offer other than support. Carmen and I both feel that it's important to honor everyone that passes away from HPS . Each and ever y one of them are part of our family. Each and every one of them has played a part in helping all of us with HPS . We learn something from everyone's stories. These are the people that have gone before us and have made life better for those of us left behind. Over the years I've lost a number of friends with HPS . I consider each of them a special gift. Each of them has touched my life and I wouldn't trade those friendships for anything, even though it can be hard to watch your friends getting sick. Here's what Carmen writes about Blanca. I never knew Blanca, but Carmen spoke wit

Around the rotunda are historical paintings depicting early American history. This one is of the signing of the Declaration of Independence.

This is the painting that is at the very top of the Congressional dome.

While in Washington at NIH Ryan took Elsie and I on a tour of the Capitol building. This is in the rotunda looking up at the dome. Note the carving under the windows. It goes all the way around and depicts scenes from early American history.

Here I am with my friend Leann at the Inner Harbor in Baltimore.

Ryan and Sara have made a Web site with all the info you'll need about their wedding. They've registered at Crate and Barrel and Target. They got a very good deal on hotel rates and the hotel is right by the church - you can walk! http://weddings. theknot.com/ pwp/view/ co_main.aspx? coupleid= 5113550028972343

My back porch has been hanging over my head all summer. The one thing that makes Kansas City different from pretty much most of Kansas is that we have lots of trees and lots of moisture - much more like the East Coast than you'd imagine. That means that everything and anything grows here. My apartment is on the ground level and has a nice patio area. It's one of the things I liked about it when I rented it - although that was before HPS, asthma etc. These long strands of ivy grow everywhere, over the fence, up the trees etc. I know they're not good for the trees or the fence, but they're so pretty. The problem is they do grow everywhere, including right over my patio. That patio has looked like a jungle for msot of the summer. I keep my blinds closed mostly because of the glare, but also, even when it's nice, I can't stand to look at the mess out there. When I get out to try to cut it back, it's not long before my allergies are kicking in. I get hives and I

This is Ryan and Sara in the Inner Harbor in Baltimore. Today they called me. They were having fun in Crate and Barrel registering for wedding gifts.

I couldn't resist taking a close up of this door. This might sound funny, but doors and gates show up a lot in my artwork - at least the artwork I do for me. I like the idea that it isn't clear if you're coming or going - leaving something old behind or entering into something new. They symbolize a kind of transition, and sometimes I feel like my life has been full of a lot of transitions.

This is the front of the church Ryan and Sara plan to get married in when January rolls around. While in Washington I took photos to work on some artwork for them. This is actually the front, although the side of the building does look more like the front - grin.

This was also just posted to the Hermansky-Pudak Syndrome adults list and I thought some of my other readers might also find it useful. It's a free, nationwide phone information service run by Google. Dial from any phone (1-800-466-4411)

Rick Guidotti and the Under the Same Sun project have put together a petition to present to the Tanzanian government next month condeming the murder of 28 people with albinism so far this year. They were murdered so that their body parts could be used in witchcraft rituals by local witchdoctors. The petition will let people with albinism in Tanzania know that we are behind them and let the Tanzanian government know that the world is watching. If you'd like to sign the petition, go to: http://www.underthesamesun.com/petitions.php

When I first moved to the neighborhood I live in, one of the things that took the longest was learning which businesses were in the area. Sure, if I needed a dry cleaner, for example, I'd ask someone to recommend a dry cleaner and I'd get directions. But, walking up and down the streets, or driving up and down the streets in a car or bus, I had no idea what businesses I was passing. Funny story - for the longest time I thought this one particular place was a Big Bob's Pizza, but it was actually Hooters - surprise! Some of my totally blind friends are now using GPS systems on their cell phones or braille reading devices to get information about what's around them etc. There are a number of products out there now, and sadly I just don't have the time to research them or the money to buy anything like this - but I thought some of you might find it interesting. Here's a press release about a new product that was featured on Science Daily today. http://www.sciencedai

An article came across my desk today about some scholarship winners - and I thought I'd post it just in case anyone out there in HPS land, or on the NOAH boards etc. is thinking about attending college at either of these university systems. It seems there's a little scholarship money out there if you call, find out, and apply next year. The Dale M. Schoettler Scholarship was established in 1991 for San Francisco State and San Jose State University students. When Schoettler, a blind businessman, died in 2001 he left the CSU $4.8 million from his estate to assist blind and visually impaired students across the 23 campuses. Link to the article about this year's winners: http://www.redwoodtimes.com/local/ci_10490215

Hey gang, Don't worry, I'm still here. Some of you are so sweet! When I don't post for a day or two you check up on me. Grin! I'm okay, just super tired. I worked late Tuesday and Wednesday nights and then last night I went home at the normal time and went straight to bed. I didn't wake up until this morning! I feel so much better! So stay tuned for more pictures from the trip! And more HPS News, as always.

Those who are registered with the HPS Network should get the following postcard soon! Start saving now for the HPS Family Conference New York!

Here's our little pizza feast from another angle...grin.

I’m tired. I’m very tired. It’s going to be a long week and it’s only Tuesday. I don’t think I realize just how much the trips to the NIH take out of a person until I get home. All I’ve wanted to do today is sleep. I’m completely worn out. I’m usually worn out by the time I get to NIH and I return a different sort of worn out. The trip was full of some good news. First, the mystery lump in my breast is – drum roll please – not cancer. Yahoo! I really didn’t feel it was because I’ve been through this before and it always turns out to be a calcium deposit. But still, there’s always that “what if” lurking in the back of your mind whenever anyone in an all-knowing white coat wants to test something. Had it been cancer I don’t know what we would have done next. It would have affected the drug trial, and since I already have pulmonary fibrosis, I suspect many of the cancer treatment options, like radiation, would have been a bad idea for my lungs. I was afraid I’d find myself in a pick-your-

Here's the Washington Gang eating dinner and listening to Dr. Markello explain the laws of probability and how doctors can narrow down things to determine a cause-related effect. In the photo are Dr. Markello (turned around), Elsie (hiding behind Dr. Markello) Nancy, Sara, Ryan, Julie, Sara and Gina.

Last week we added three new people to the HPS Network registry. That puts us at 67 on the 100 People Search countdown. Thanks to everyone out there helping to get the word out about HPS.

As those on the adult HPS listserv know, we found out that this past week was Kevin's birthday. Kevin is the nurse practitioner who cares for adult HPS patients at the NIH. We decided to throw him a surprise birthday party. It was fun to try to plan and I think Kevin appreciated it. We debated about having a cake becasue we'd heard Kevin was on a diet (not that he needs to be) plus we weren't sure how we were going to smuggle in a cake unnoticed. Hilda came to the rescue and got the cake! We found out that there's a certian type of ice cream cake that he likes. We also gave him a card full of messages from some of the HPS'ers on the listserv.

Today was a good day. The temperature seems to be gone and I still have no idea why anyone would have ordered oxygen for me - I certianly never even came close to needing it. I don't have any test results back and my pulmonary function tests are tomorrow. Today we did the CT scan, Ecocardiogram, DEXA scan, lots of blood work etc. They tried to get blood gases on me again and once again they didn't get it. I must be a hard stick - I don't know. I hate to be an uncompliant patient, but I let them stick me three times and three times the lady was in there moving that needle around, digging around trying to find an artery as opposed to a vein. She never could get it and when she wanted another go at it, I finally said no - at least not again today. That hurts!!! And when they keep going at it, then it gets really, really sore! Lots more to share - and some pics as well! But, time for bed. My PFTs are bright and early in the moring, and Clara, the woman that does them, is here

We've all arrived at NIH. This time I'm here with my friends Elsie and Nancy. It was quite the eventful morning getting here. Besides being very behind etc. nothing went according to plan. First problem - I slept through my alarm. I had all these things I was going to do in the morning and woke up two hours after I had planned to get up! I hadn't done the laundry for my trip yet, so I threw on some clothes and rushed downstairs to get the laundry going. I also had some work things I needed to take care of etc. but I was having computer issues. I ran around trying to get things together for the trip. I finished the laundry and had what I was planning to take all neatly folded on my bed to put into the suitcase. As I was doing this, out of no where I proceded to throw up all over my suitcase and the clean clothes in it! I didn't have anymore quarters and I was running out of time. I had to beg quarters off a neighbor to at least wash the now yucky clothes (which are still

Here's some information I thought I'd pass on that Noel posted to the HPS adults list - I know there are other low vision/blind folks that read the blog besides HPS'ers and I thought everyone might be interested. Apparently the new version of the IPOD has some accessability features that includes spoken menus. I'd love to hear some reviews if anyone has had a chance to play with it. Thanks Noel for the info! http://www.apple.com/ipodnano/specs.html

I'm not a FireFox user, but for those that are you might want to check this out and see what you think. I haven't tried it yet. Maybe when I get some time - ha ha ha.....don't laugh too hard. The vision research staff at Lighthouse International has developed an innovative way for visually impaired internet users to browse the web. LowBrowseTM, an add-on to Mozilla's Firefox browser, enables people with moderate or severe low vision to view web pages as the original web author intended, as well as read the text on those pages in a format that is tailored to their own visual needs. Some of the features of this new extension include: a reading frame at the top of the browser in which users can customize font, text size, color contrast and letter spacing while preserving the original site layout below image enlargement speech capability and much more. Download LowBrowseTM Requirements: Before downloading LowBrowseTM, be sure that you are currently running Firefox 3 or high

Noel sent me this. It's a total stitch! So, for those needing a little comic relief, check it out. Who knew I made the news? http://www.inews3.com/topstory.php?id=486561746865727c4b69726b776f6f64

It’s about that time – time to go back to the NIH for my two-year follow up on the pirfenidone trial for the pulmonary fibrosis of Hermansky-Pudlak Syndrome. It doesn’t seem like it’s been that long. Usually I start to work up to “the big trip” ahead of time. I probably carry way too much stuff with me, partly because the suitcase is sitting on my living room floor several days in advance. This time it’s as if I’m in denial that the time has arrived. I’ve been so busy. Getting ready to be gone makes me even busier, if that’s even possible. I haven't done any of the things I need to do to get ready - things like making sure I've got all my medical stuff together, making sure I don't have an extra bottle of study drug somewhere (as I'm supposed to bring back any left overs) and hey, just getting my hair cut! I have noticed a little increased shortness of breath – paranoia or reality? It seems to happen only at work though and has improved as the summer weather has come to

I'm posting this for the general information of parents with blind/low vision kids. The issue of large print, braille or books on tape not showing up at the start of the school year has been a long-standing problem for kids with vision impairments. The IDEA special education law has been amended and kids and their families should have some additional legal teeth to push the issue. The National Federation of the Blind, one of the organizations pushing this issue, has put together a one-pager for parents. Note that at the bottem they are looking for feedback from families. Textbooks on Time Fact Sheet Prepared by the National Federation of the Blind Blind and visually impaired children often struggle in school because their books, whether in Braille, audio, or other accessible formats, arrive late. These children must wait, while their classmates proceed with the curriculum. This leads to children who fall behind and, tragically, can result in children who fail because the system has

Last week we added two new people to the HPS patient registry kept by the HPS Network. So, for the 100 People Search project, that puts us at 70. Some on the listserv have been trying to help me create a graphic for this countdown, but honestly, I haven't even had time to process everything everyone sent on and off line - I am working on that though. Everyone keep up the good work! Both of these new folks were found by another HPS'er sharing their story with someone they knew that had albinism.

I've made about ten of these. They are super easy! And I'll be sending them in the box. I was at Michael's and they had this foam art stuff. They had pre-cut trees with sticky backs for other projects as well as little stars etc. I stuck the foam stickers to a thin posterboard and cut around them - then glued a pin on the back side. Easy! The white paper showed through the slits in the trees I bought, so I filled it in with glitter glue.

This is another item going into the box. I only need to put the hanger on her. She's a Mrs. Clause egg made of paper mache, painted, and then sealed with varnish.

As I've posted before, one of the things we're trying to raise money for HPS is to establish the HPS craft bank. These are craft items that we can sell in various ways. I have a box that as soon as it is full will be going to the Network. One of the items in the box is this frame. I wanted to try doing mosaic and I'd never worked with tile before, so I made this frame as a learning project. These are small size tiles you can find that are used to tile bathroom floors. It's a way to reclaim items you might find at a garage sale, like say a picture frame.

I just want to send out a congradulations to Kathryn. She just landed her first post-college job. Way to go Kathryn!

Blueberry Lemon Bread Ingredients 2 cups flour 1 ½ teaspoon baking powder ¼ teaspoon salt 1 cup sugar ½ cup oil 2 eggs 1/3 cup milk 2 teaspoons grated lemon peel 1 to 2 cups blueberries Method: Preheat the oven to 350 degrees. Grease and flour a 9 by 5 loaf pan. (Note: I find that this works better with the mini loaf pans you can buy at the grocery.) Sift together flour, baking powder and salt. Beat together the rest of the ingredients (except the blueberries). Fold in the blueberries. Bake for 50 to 60 minutes or until the loaf looks golden brown and a toothpick comes out clean.

Last week I took care of my godkids for a little while, and as usual, I took pictures. They aren't quite as good as usual because the batteries in my camera were dying. The evening didn't exactly go as planned. The kids have been with their grandparents but now they're back. They have an older brother from a previous relationship that their dad had before he was married. They adore their brother, and they'd just seen him. He went with his dad as they have short visits and what's the point of a visit if he spent the time with me instead of his dad? They went to pick Annette up at the doctor - but along the way they stopped to run some errands and the older brother got stung by, I think, a nest of yellow jackets. That meant a visit to urgent care etc. Needless to say the two younger kids were about to jump out of their skins with excitement - and then when the wait turned out to be longer than expected, well, they just couldn't contain their energy. They run arou

I've been digging files out of my old computer and in that process found some old photos. This one was taken several years ago, before I had a digital camera. There's a very nice restaurant in Colorado Springs called The Thunderbird and this is the view from the patio at the restaurant. We went there for Thanksgiving dinner one year.

Here's some of our HPS crew marching in the New York Puerto Rican Day Parade back in June I think. Liz had sent me a pic, but it was very bit-mappish. She posted this one to the HPS Parents listserv and it was much better, so I thought you all would like to see it. Go New Yorkers!

This pic is a little blurry - but - it's of some of the Puerto Rico outreach crew. They'd had a long day, happened to be driving near the ocean, and decided to go in, clothes and all, to cool off.

I want to send a kudos out to Sandra, an HPS’er in Puerto Rico. It’s election time in Puerto Rico, just like in the rest of the United States. When various candidates for office come knocking on Sandra’s door to talk politics and ask her for her vote, she tells them that she will gladly listen to what they have to say if they, in turn, listen to what she has to say. She invites them in her home, talks to them about the special needs of HPS patients, and gives them a brochure or packet of information to take with them. Way to go Sandra!

I know. I hate it when retailers start pushing the Christmas buying season months and months before the frost even forms – but I’m joining them this year. As you know, the HPS Network has been super busy this year. We’ve done more outreach than ever before. We’re assisting more people in getting to and from the NIH than ever before. We’re sending out more doctor packets and patient packets than ever before. And none of it happens for free. We’ve got to raise the money to keep paying for these things. So, in that light, I’m willing to be one of those annoying early Christmas people and remind you that for a mere $17 the HPS Christmas CD could be yours! It makes a great gift. It’s a great item for all those little gift exchanges we all have to do over the holidays. If you’d like to buy a CD, or if you’d like to volunteer to sell some of the CDs, please contact the Network – www.hpsnetwork.org .

Karen Tillman has launched a plan to help raise some money for HPS. Go Karen – every little bit helps. Karen has decided to collect pop tops from cans. She’s also collecting Coke points and Pepsi points to earn towards getting prizes for her Human Race fundraiser. If you’re willing to collect pop tops and send them to her, she’ll process them. Her mailing address is: Karen Tillman, Regional Coordinator USA 4114 Landerwood Dr Greensboro, NC 27405 Think of ways you can gather the most tops – the break room at work for example?