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December 2008 - Posts
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While doing my HPS research I found another Web site that might be of some interest. It's a search site for camps for visually impaired kids. Some of you might want to search the site, and others might want to make sure your camp is included. http://www.kidscamps.com/special_needs/visual_impaired.html
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One of the things I'm working on for the Hermansky-Pudlak Syndrome Network that in a previous post I included under "outreach projects" is I'm building a database of every non-profit or government agency that serves the visually impaired. The truth is we just can't rely on doctors to diagnose Hermansky-Pudlak Syndrome. I'm hoping to engage the greater blind/low vision community to help us get the word out. That means that in my research I'm finding all kinds of cool stuff related to blindness and low vision. This evening I found a non-profit based in Philly called National Exhibits by Blind Artists. They have an annual art competition and organize national touring shows for winners. I must confess, one reason I've never taken my artwork past "hobby" and never studied art seriously is that it always bugged me that I could never tell if people that were responding positively to my artwork were really responding to the work, or the fact that I did it. If you have no expectations anything can be impressive. No one expects a legally blind person to be interested or good at art - although I have many legally blind friends who are talented artists. I have one friend who is legally blind and actually makes her living solely on her art. It's for that reason I've always viewed many of these programs with a bit of skepticism. But, hey, I've got to tell you - these guys are promoting some very talented artists and they just happen to be blind. So, I'm giving them a plug and hoping you'll check out some of their work online. http://nebaart.org/2007/index.htmAs for me, these guys are out of my league - at least for now. My big goal in artland is that someday I hope to have enough paintings completed at one time to do a show anywhere - and I'd like to use the show to promote HPS. I'd like to do it as a fundraiser, but to be honest, that will depend on the venue and whether I happen to fall into the catagory of "starving artist" by then. Funny story - when I finished college it took me a year to find my first job. I ran into a lot of discrimination. During that time I did sell some of my artwork - ironic isn't it. I was a starving writer making ends meet by artwork. I have to give my mom the credit though. She was my "promoter." I'm so not good at that stuff!
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I got so busy I didn’t get to blog about one of the most important events of the year – Adventure Fitness caroling and Echo and Karen’s annual after party. Although I’ve only been a part of this Kansas City ritual for about five years, now it just doesn’t seem like the holidays without it.
Adventure Fitness (not sure if that has always been the name or not) is a program that started many years ago. I’m a little hazy on the exact details. What I do know is that it was organized for a number of years by Linda Ray who was the teacher for the visually impaired in the Shawnee Mission school district for decades.
Often kids with visual impairments get left out of sports. They don’t always have the vision or the related hand-eye coordination to play many of the popular competitive sports.
Personally, I remember gym class as my own personal hell on earth. Not only did I spend most of the hour completely clueless about what was happening, but I had to endure the added social humiliations. I was always the absolute last kid to get picked for a team. In fact, the other kids would actually argue about who would be “stuck” with me. And the unstructured environment of gym class meant lots and lots of teasing. I hated it, and I think this is why I’ve found getting in a good physical routine as an adult so hard.
Linda recognized this problem and started arranging events for her students and other blind and visually impaired kids from around the metro area. She planned activities that harkened back to her days at camp and were easier for V.I. kids to do.
Over the years the activities were also used to create lessons in independent living. Christmas, for example, presented an opportunity to bake Christmas cookies. Kids who at home were never allowed near a stove were instructed in how to do so as a blind person – and the spoils of the day given to residents at area nursing homes.
The one activity of the year, however, that you could pretty much promise everyone – current and former – would show up for is the annual caroling event.
We rehearse and then perform at area nursing homes. This year we had a number of local musicians join us.
We do a mix of Christmas music, Hanukkah music and a few other folk favorites. We try to pick music both traditional and off-beat that represents the background of all the people involved. It’s just such a neat experience. I really enjoy learning songs from other cultures.
And then at the end of the day when it’s bitter cold and we’re all chilled to the bone as we watch our breath lingering frozen in the air, we gather at Echo (Linda Ray) and Karen’s house. They always make Chili and we all bring something.
I’m not a big Chile fan, but every year I can hardly wait to get to that steaming hot bowl of Chili! It tastes sooo good when you’re so cold!
I forgot my camera this year. Drats!
This year I also found myself having to skip every fifth song or so because I was getting all coughy and short of breath.
If anyone knows any visually impaired kids in the Kansas City area, this really is a great program and you can participate in the activities that interest you. It’s tons of fun!
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Thanks to several of you who were so thoughtful this holiday season, I’m recovering from my post-Christmas eating orgy at Homers by drinking a latte and working on some projects. (Kevin would have killed me yesterday if he’d known what I was up to – but it was Christmas!)
I’m trying very hard to make working for the HPS Network, whether I’m being paid or not, my full-time job these days. The trouble is I’m not on disability right now for nothing and sometimes I just can’t get it all in. But, when I’m really involved in a project, it’s so helpful to be able to get out of my apartment and go to my “virtual office” – Homers.
I want to work from home. I don’t see how I can ever work again otherwise right now. Between all the doctor’s visits, health problems etc. it seems like working from home is really my best option and I think I have a good temperament for it. Yet, as perfect as it sounds, there are days when the dust on the shelves in the living room, or the dirty laundry in the hamper – or right now the huge paperwork mess all over my study and dining room table – and well, to concentrate you just have to get away.
The HPS Network is not unlike the corporate job I left in that there’s so much to do and never enough resources – human or financial – to get it all done. And, just like in the running of a magazine, you start out the day with a list of things to do and then a crisis hits and the list is out the window to be put off yet another day.
Unlike my corporate job, however, I can be in the hospital at NIH, or go to the doctor when I need to, or have a bad day where I stay in bed, or take a nap halfway through the afternoon or properly attend to my “code brown” problem. It has made managing my health problems so much easier to have some schedule flexibility.
But I’m a type A personality and if I set out to accomplish a task at the first of the day it does bug me if I go to bed with it undone. I have to work at setting reasonable goals for the day.
Among the projects I’m working on now:
We’re having some Yahoo-related issues with the listserves. They aren’t affecting the people already on the list, but for some reason when I try to add someone we’re having issues.
I know everyone must wonder why they never get a newsletter. Well, the HPS novel, book, whatever, is so close to being finished. We’re wrapping up some translation issues and ran into some technical challenges in the process. Now the printer isn’t accepting new jobs until after the first of the year, and I really won’t be able to deal with him until after I get back from NIH. I promise – this problem will improve now that I’m not doing it in addition to working.
I’m hoping to sell some “sponsorships” for the conference to generate some revenue to help us pay for things this year. I’ve identified a list of potential companies and worked out some of the details. Now I need to get with Lisa for designing some promotional materials and get busy on starting to sell these things – that should have started in Nov. If anyone is a sales person and would like to help sell, I hate selling and would love to delegate that part of the job! I also need to check with an attorney about a contract etc. If anyone has any ideas about potential sponsors, I’m open to them, although the Network’s policy is not to accept funding from drug companies. Just FYI to the creative thinkers out there!
The HPS Network will soon be launching our new Web site. A big hats off to Matt who has worked very hard on this project. We’re getting close! I’m very excited about some of the new features we’ll be introducing over the next year. We’re planning a “soft launch” instead of a big grand tada moment. We had been trying to hire this job done, but for a variety of reasons that just wasn’t working well. I think we need to get out of the mentality of doing a tada moment – the Web site should never again be a static thing. It should always be in a state of update and improvement.
Grants – we need grants! I’ve identified 12 foundations that offer grants we might actually qualify for – and Matt’s girlfriend found two more. If I’m ever going to be able to make working for the Network as a job a reality, I’ve got to come up with a way to fund myself. I couldn’t sleep at night doing it as a “job” unless I can find a way to make the Network more than I cost the Network through some combination of fundraising, grant writing or money savings. I’m going to ask Voc Rehab. to make non-profit management from home my vocational goal and am hoping they will help fund some educational opportunities to teach me how to do this better, or to beef up my resume to be more attractive to funders.
Conference – it’s time to get in the heat of planning conference. After the New Year conference planning will be in full swing! No one has any idea how much time that takes – trust me.
Standard of Care project – This is a vital project that hasn’t gotten all the attention it needs because we’ve had to address more pressing issues to keep the Network afloat. However, we hope to publish, in cooperation with our scientific advisory board, a much more extensive and complete standard of care for HPS.
And then there’s the running of the listservs, answering questions from perspective new members, ongoing outreach projects and attending to situations that come up among our members.
My mom keeps worrying if I’m bored now that I’m not working. HA! Trust me – I’m not!
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Better late than never - one of my Christmas presents to myself was to finally get my tree up. I didn't get it finished until Christmas eve, but it snowed much of the day and it was so fun to decorate the house and listen to Christmas music as it snowed outside. The only down side was I didn't make the candle light service at church as I had wanted. The dust from all the Christmas decoration boxes and the many trips up and down the stairs seemed to really kick up the old asthma. I was coughing a lot. These days I tend to avoid church services when I'm coughing a lot because I feel so disruptive. Everyone's trying to be helpful and hand me cough drops and water (neither of which really help much) as the minister is trying to preach. It makes me feel bad to be so disruptive to the sanctity of the service.
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 By now the Appell family should have gotten their gift as well so I think I'm safe posting a photo of it. The Appells live in a heavily wooded area on Long Island and every year when we have our board retreat at their house it's fall time. The leaves are so pretty! And the road going up to their house is curvy like this. I didn't take a photo when I was there, but I found some photos in some photography books that reminded me of it and used those, in combination with my memory, to paint this. It's very impressionistic. But then again, several of the famous impressionists were also legally blind! Go figure.
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 For a while now some of you have wanted to see some of my paintings. It has been years since I've finished a painting, but now that I'm home I've been painting again and very much enjoying it. I can post this now because my mom should be on a plane on her way to the United States. This painting is wrapped in snowman Christmas wrap for her when she arrives. It's hard to photograph artwork without a proper set up to do it, but this is my best try.
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Here's another scholarship opportunity that might be of interest to those with Hermansky-Pudlak Syndrome. It's from Project Red Flag and is for people with bleeding disorders. I know many of you are waiting for news on the HPS Kirshner scholarship. Well, it seems we had so many great applicants this year the Kirshners are having a hard time choosing a winner. They've asked for a bit more time. Here's the link for the bleeding disorder scholarship: http://www.projectredflag.com/scholarship.htm
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 Tim sent another photo that he says is one of his favorites. This one is of the doe fawn - although when does a fawn officially graduate to a deer?
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 Regular readers will remember that a short while back I posted a photo I'd fallen in love with of two fawns with albinism. The photo had come in one of those forwarded e-mails that goes around the country and it made it's way to Kathryn. Kathryn sent it to me.
We had no way of knowing who took the photo, but suspected it was taken by some guy named Tim.
Well, you'll never believe this! Tim found us and his photo here on the blog. He was gracious enough to send two more photos. He says the fawns have visited his yard in Minnesota for more than two years now nearly every day. He and his wife say are honored to have such rare and beautiful creatures visit them. And, to give the photographer credit, his name is Tim Roeschlein.
I know you all will enjoy it - and I suspect many of the kids with albinism will get a kick out of this.
Thanks so much Tim for sharing your visitors with us!
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 Thanks to Lisa's work, we have an updated HPS world map. These are all of the places around the world where we've been able to document cases of Hermansky-Pudlak Syndrome. Although HPS is most common among those from Puerto Rico, it does occur all over the world. This is very important for people to understand as too often those seeking tested are told, "You couldn't have HPS - it's too rare and you're not Puerto Rican."
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Some of you have been e-mailing and calling wanting the rest of the story on my skin infection and the biopsies taken by the dermatologist.
Well, leave it to me to throw everyone a monkey wrench.
It turns out I contracted a bacteria that is a bit unusual (so I’m told) but typically transmitted in hospital settings such as an infected central line or I.V. Since I’m in the hospital at least three times a year, and spend a lot of time with other people that are often in the hospital, this isn’t a big shocker. Instead, I’m looking at it as another “educational moment” in my life. I am now officially a germaphobe and will be carrying Purell at all times.
The bacterium is Spingomonas Paucimobilis. I’m sure I didn’t get it when I had the IVs for my IUD thing last April because I’ve had this infection longer than that.
The good news it is treatable and doesn’t cause too many nasty problems other than the ones I’ve already experienced – although that was a bit more problematic thanks to my bleeding issues.
So, I’m now on antibiotics and we’ll see what happens next.
A little trivia note from my own research – a high school student in Canada won a national science award for his project with this bacterium. He got it to decompose 40 percent of a plastic trash bag in three months. Glad my boobs aren’t plastic! HA!
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It’s that time of year. It’s the time of year when a lot of scholarship applications are coming due.
For those anxious to know who this year’s winner of the Kirshner Scholarship awarded annually to someone with Hermansky-Pudlak Syndrome or their children, I don’t yet know who the winner is – but I’ll post it when I know it’s been cleared by the Network.
In the meantime, the subject of how hard it is to pay for school has come up on the HPS adults listserv. In this economy, I’m sure it isn’t easier than when I was in school! I feel for today’s students. It’s the rare exception that graduates and doesn’t start life straddled with debt.
But, in my history I’ve also served on scholarship award committees and it’s amazing to me how few people sometimes apply. I think it’s hard to find the scholarship opportunities out there and people give up trying. Or, they think if they don’t have straight A’s there’s no point.
I’m here to tell you – there’s money out there going unclaimed.
To many, this might sound obvious – but if you’re legally blind the first place to start is your state’s commission for the blind. It can’t hurt and often there are resources there to help.
Next, invest some time at your public library and do the shoe leather work no one else is willing to do. Get a librarian to help you if you need it – they will.
Make a list of every special interest you might meet.
There are scholarships for those that are legally blind, for those that have Crohn’s or colitis, or those that have bleeding disorders etc. There are scholarships out there from churches, church denominations, from unions for member kids, corporations, the children of vets. etc.
I just spent two seconds goodsearching and found this link of scholarships for those with a Hispanic background. They might be old – I don’t know. The point is – it’s out there. Put your hat in and go get it.
http://www.uga.edu/hispanicproject/scholarships.html
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