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October 2007 - Posts
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Dr. Francis Collins, who was one of the docs at NIH in charge of the Human Genome Project, is going to be awarded the Presidential Medal of Freedom, the highest civilian honor our President can give. I'm personally a Dr. Collins fan. Although he would never know me from the millions of people he meets every year, I've met him a few times while representing the Hermansky-Pudlak Syndrome Network at different functions - mainly functions for the Genetic Alliance. He's always struck me as friendly, very approachable, and he's got a great sense of humor. One of the books I read this year was his book "The Language of God" where he discusses why his study of science in general, and genetics in particular, prove to him the existence of God. I've actually been meaning to blog about the book for some time, but it's a very heavy subject and I wanted to do it when I had both plenty of time and felt well - and those two moons haven't come together for a while - GRIN! I would suggest, however, that regardless of whether you're a Christian or not, or whether you're a creationist or an evolutionist, it's a book you should read. If nothing else, he gives a very good background on the different schools of thought on these issues and it's great food for thought. I must say, however, that I especially enjoyed his book because his views were so similar to my own. Sometimes that's a hard place to be when you live in a state like Kansas. Grin! But more on that another time. You'll also see at the end that Genetic Alliance is pushing for Dr. Collins to get yet another award from Congress. THE WHITE HOUSEOffice of the Press SecretaryFor Immediate Release October 29, 2007STATEMENT BY THE PRESS SECRETARYPresident George W. Bush today announced recipients of the Presidential Medal of Freedom, the Nation's highest civil award. Established by Executive Order 11085 in 1963, the Medal may be awardedby the President "to any person who has made an especially meritorious contribution to (1) the security or national interests of the United States, or (2) world peace, or (3) cultural or other significant public or private endeavors." President Bush will honor these recipients at a White House ceremony on Monday, November 5, 2007.Gary S. Becker has broadened the spectrum of economics and socialscience through his analysis of the interaction between economics andtopics such as education, demography, and family organization. Hiswork has helped improve the standard of living for people around theworld.Oscar Elias Biscet is a champion in the fight against tyranny andoppression. Despite being persecuted and imprisoned for his beliefs, he continues to advocate for a free Cuba in which the rights of all people are respected.Francis S. Collins has revolutionized genetic research. Under his leadership, the Human Genome Project mapped and sequenced the full human genome and greatly expanded our understanding of human DNA.Benjamin L. Hooks has dedicated his life to equality, opportunity, and justice. He is a pioneer of the Civil Rights movement, and his efforts to extend the full promise of America to all its citizens have helped bring our Nation closer to its founding ideals.Henry J. Hyde has served America with distinction. During his career in the House of Representatives, he was a powerful defender of life and a leading advocate for a strong national defense and for freedom around the world.Brian P. Lamb has elevated America's public debate and helped open upour government to citizens across the Nation. His dedication to a transparent political system and the free flow of ideas has enriched and strengthened our democracy.Harper Lee has made an outstanding contribution to America's literarytradition. At a critical moment in our history, her beautiful book,To Kill a Mockingbird, helped focus the Nation on the turbulent struggle for equality.Ellen Johnson Sirleaf has helped heal a country torn apart by conflict through perseverance, personal courage, and an unwavering commitment to building a more hopeful future for her homeland. The first woman elected president of an African nation, she has worked to expand freedom and improve the lives of people in Liberia and across Africa.#########Please note – this is not the Congressional Gold Medal, for which a bill has been introduced in the Congress. Keep those letters coming in for that effort – it is a different process entirely. http://geneticalliance.org/ws_display.asp?filter=policy.honor.cosponsor
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Once again, I’m going through one of my excessively tired sleeping jags. I don’t know why these happen to me, or whether there’s any connection to HPS, but I’ve had several periods a year like this since my early 20s. Suddenly, for weeks at a time, no matter what I do I can’t get enough sleep. I feel tired ALL THE TIME.
I have had a stomach bug, and the past two days I’ve had the runs and joint pain – so maybe its connected to that – or maybe not. But, I went to bed last night at a reasonable hour, and woke up this morning at noon. I got up, showered, and tried to get moving, but felt like my limbs were made of cement.
So, I laid on the couch and turned on the television. This weekend I’ve watched more TV than I’ve probably watched in months. I think it’s probably a blessing I slept through most of it.
Could someone please tell me what’s going on with television??? I’m a little out of the pop culture loop. Maybe I missed something? Was Hollywood taken out by a bomb or something? There must be some drastic explanation for the complete lack of creativity on my TV set.
Although I watch little television, I do have cable. I have cable because I want the news channels. I might be a total moron when it comes to which pop star has crashed their car this week, or who’s getting out of rehab or having a baby – but I can tell you what’s going on with the election in Argentina (no thanks to my TV by the way.)
I’ve also traditionally been a huge fan of the Discovery Channel, the Discovery Health Channel, the Learning Channel and the Arts and Entertainment Channel and Bravo! Now, however, it seems that unless you look up the number of the channel in the cable guide, you’d have no idea what channel you’re really on. Would someone please explain to me why “Ice Road Truckers” is on the History Channel?
Okay, I confess, I watched it. I had a sort of morbid curiosity with these huge trucks, weighing several hundred tons each, driving across ice to deliver goods and parts to remote mines in the Canadian wilderness. Perhaps it’s all those warnings I got as a kid about not playing on the ice, even if it seemed thick. Or maybe it was the occasional nightmare I had as a child (a result of graphic warnings about ice) about how horrible it would be to fall through the ice and not be able to get out of the water. I know its television, but between my dosing in and out, I was holding my breath thinking one of those trucks might just fall through the ice – oohhh shivers. Horrible!
So, maybe it’s “legit” TV, but still, what’s it doing on my beloved History Channel? I was looking for something a little more, well, historical.
How is a show about “pimping a ride” on The Learning Channel, or a show about living in the Playboy mansion worthy of channels that started out with a mission of covering the arts?
And while we’re griping about television, would someone please explain to me why very rich and spoiled people think their lives are interesting enough to be followed 24/7 by cameras, or even worse, why cable channel executives have somehow fallen prey to this narcissism? I have yet to make it through a complete episode of any one of these programs. I channel surf, watch for a few minutes, quickly get bored and move on only to find essentially the same “story line” on another channel.
Or how about the “finding love” shows? Where do these people come from? You almost feel compelled to watch a few minutes, sort of like you feel compelled to watch a car wreck. But, again, I never make it all the way through an episode of “Flavor of Love” or “I Love New York.” Are you going to tell me that there’s really that many people out there with such a warped sense of self worth that they’d expect to find “true love” like this? But, I guess the Networks don’t care if you make it through an entire episode. They’ll keep rerunning them for years on end, on channel after channel, so eventually even by channel surfing you might piece together the entire thing.
Even the news channels, the reason I have cable in the first place, are a disappointment. I can watch a solid hour of CNN or Fox and still not have an overall, general idea of what’s going on in the world. I sort of miss CNN Headline News. Yes, it’s hard to really adequately represent the world’s news in a half hour – but at least there was somewhere on the TV you could turn to and know, generally, what was happening in the world.
The news channels aren’t all bad. I do find some “good” things there – but it seems like the rare treat instead of the expected norm. Enough of the talking heads, the arguing, the bickering – give us something that actually sheds light on issues we don’t even know exist. Give us news that represents the spectrum that is America. Give us news that challenges us to be something, to do something, better than what we did today. There’s six billion plus people in this world. Surely we as the media can find something. It’s one of my disappointments that I’m not playing a part in that mission.
It feels like television is ripe for a shake up – some sort of creative revolution. I hope it comes soon. I have a feeling I’ll be spending a few more crabby days on the couch.
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After demonstrating my incredible grace by falling out of the bus, the week just got better. Grin. Here’s a little health update – again, probably as much for my own record keeping as anything else.
Tuesday night I had a really bad night. I got sick to my stomach and threw up several times. Once you’ve done that once, and you still feel yucky in the tummy, it’s hard to go back to sleep again for fear you’ll do it again. Trust me – there’s not much worse than cleaning up your own vomit. YUCK!
Wednesday morning I slept through my alarm and missed the bus. I still felt a bit queasy, but my tummy always feels a bit off in the morning. Usually, by the time I take a shower and get dressed, it’s better. No such luck. I ended up staying home with a fever, muscle aches and tummy that was having trouble even keeping my medication down.
By Wednesday night I felt somewhat better – not great, but better. Thursday I went to work and felt pretty good in the morning, but crappy in the afternoon.
Today I still don’t feel “right.” I feel better, but extremely tired and sort of weak.
I thought it was the flu, but Donna thinks it’s a stomach bug. I wonder if it could have anything to do with the bacteria they’re testing my small bowel for next week? I don’t know if that’s possible or not. I just know this week hasn’t been so great.
But, I do feel like I’m on the upward swing…..I didn’t have a fever yesterday, although I think I may have had one at work this morning. I just broke out sweating from head to toe, and no one else was hot.
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It’s hard to imagine that 31 years ago today I awoke to my Dad cooking pancakes. That’s right. The man that to this day never cooks had the box of Bisquick out with a little maple syrup and some butter and was fixing a feast of pancakes.
At the time this sight made a bigger impression on my three-year-old mind that what had taken place at 2:31am that morning – the birth of my brother. Who needs a crying baby when you’ve got pancakes?
When I arrived at preschool that morning, and was asked what had happened at my house, I proudly proclaimed that my dad had cooked pancakes. Ryan didn’t seem real until three days later when he came home.
I came home from school and Ryan was in a baby buggy. Of course, I immediately wanted to hold him. I remember sitting with my back against the cushions on the couch as my mom explained how fragile babies can be, and then put a sleeping Ryan into my lap. His head was a solid white fuzz ball. He had a lot of hair, and it had a lot of static electricity in it, giving it a kind of Einstein appearance. Ryan woke up, took one look at me, and began to yell at the top of his lungs.
It set the tone for the next 18 years of our sibling relationship.
Ryan and I have always had a bad case of sibling rivalry. To some extent we still do. We tormented one another endlessly. Somewhere there’s a tape of Ryan’s first birthday. He opens a present and I promptly steal it from him. He screams “MINE” and I carry off the toy only to be scolded by our mom. As a teenager, my mom blackmailed me on several occasions with threats to play that tape. Grin.
But as much as Ryan and I fought (and that was almost all the time) when the chips were down we were each other’s best friend. As a military family, we moved every three years. Every new school brought new kids with new reasons to tease us both. We looked out for one another and played together until we both started to settle into the new school and make new friends of our own.
As adults, Ryan and I are closer than ever. If anything, I’m too much of a mother hen where he’s concerned. I’m too quick to butt my nose in and offer my opinion, wanted or not.
When the film crew interviewed me, they asked me that had something to do with Ryan – something like isn’t it great to have a sibling that understands HPS.
To be honest, it’s not great at all. I wish Ryan didn’t need to understand HPS.
During our childhood, when it seemed our biggest obstacles were the ordinary things that go along with albinism, that might have been true. We always had each other no matter what.
But the hardest thing I ever had to do in life was tell Ryan he had HPS.
Thankfully, Ryan is pretty much symptom-free, minus a bleeding tendency and albinism, of course. He’s 31, well established in his career, smart as a whip, outgoing, friendly and handsome when he wears a suit. Grin!
Ryan jokes that this is actually the second anniversary of his 29th birthday. I hope he has many, many more happy and healthy such anniversaries to celebrate!
Happy Birthday Ryan!
(This actually took me a little longer to write with the hand…..)
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Below is a press release I just thought might interest some of you that have been following this issue. Alliance for Taxpayer Accesswww.taxpayeraccess.org For immediate releaseOctober 24, 2007 Contact:Jennifer McLennanjennifer [at] arl [dot] org(202) 296-2296 ext. 121 MANDATE FOR PUBLIC ACCESS TO NIH-FUNDED RESEARCHPOISED TO BECOME LAW Full U.S. Senate Approves Bill Containing Support for Access ToTaxpayer-Funded Research Washington, D.C. – October 24, 2007 - The U.S. Senate last night approved the FY2008 Labor, HHS, and Education Appropriations Bill (S.1710), includinga provision that directs the National Institutes of Health (NIH) tostrengthen its Public Access Policy by requiring rather than requestingparticipation by researchers. The bill will now be reconciled with the House Appropriations Bill, which contains a similar provision, in another step toward support for public access to publicly funded research becoming UnitedStates law. “Last night’s Senate action is a milestone victory for public access totaxpayer-funded research,” said Heather Joseph, Executive Director of SPARC(the Scholarly Publishing and Academic Resources Coalition, a founding member of the ATA). “This policy sets the stage for researchers, patients,and the general public to benefit in new and important ways from ourcollective investment in the critical biomedical research conducted by the NIH.” Under a mandatory policy, NIH-funded researchers will be required to depositcopies of eligible manuscripts into the National Library of Medicine’s online database, PubMed Central. Articles will be made publicly available no later than 12 months after publication in a peer-reviewed journal. The current NIH Public Access Policy, first implemented in 2005, is a voluntary measure and has resulted in a deposit rate of less than 5% by individual investigators. The advance to a mandatory policy is the result of more than two years of monitoring and evaluation by the NIH, Congress, and the community. “We thank our Senators for taking action on this important issue,” said Pat Furlong, Founding President and CEO of Parent Project Muscular Dystrophy.“This level of access to NIH-funded research will impact the disease process in novel ways, improving the ability of scientists to advance therapies and enabling patients and their advocates to participate more effectively. The advance is timely, much-needed, and – we anticipate – an indication of increasingly enhanced access in future.” “American businesses will benefit tremendously from improved access to NIH research,” said William Kovacs, U.S. Chamber of Commerce vice president for environment, technology and regulatory affairs. “The Chamber encourages the free and timely dissemination of scientific knowledge produced by the NIH as it will improve both the public and industry’s ability to become better informed on developments that impact them – and on opportunities for innovation.” The Chamber is the world’s largest business federation, representing more than three million businesses of every size, sector, and region. “We welcome the NIH policy being made mandatory and thank Congress for backing this important step,” said Gary Ward, Treasurer of the American Society for Cell Biology (ASCB). “Free and timely public access toscientific literature is necessary to ensure that new discoveries are made as quickly as feasible. It’s the right thing to do, given that tax payers fund this research.” The ASCB represents 11,000 members and publishes thehighly ranked peer-reviewed journal, Molecular Biology of the Cell. Joseph added, “On behalf of the taxpayers, patients, researchers, students, libraries, universities, and businesses that pressed this bill forward with their support over the past two years, the ATA thanks Congress for throwing its weight behind the success of taxpayer access to taxpayer-funded research.” Negotiators from the House and Senate are expected to meet to reconciletheir respective bills this fall. The final, consolidated bill will have to pass the House and the Senate before being delivered to the President at theend of the year. ###
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Tonight's entry will be short. I"m having trouble typing. This morning it was pouring down rain outside. When I went to step off the bus, the steps were wet and slick and I went down like a sack of potatoes. I felt my one foot slip and it was all over before there was anything I could do about it. Of course, when you're legally blind everyone thinks it had something to do with not seeing. That had nothing to do with it. It was slippery and I just slipped.
Embarrassed, however, I jumped right up and announced I was fine. The bus drove away, and I wasn't fine at all. Suddenly I felt sick to my stomach and dizzy. I started across the street but everything turned red and I heard that ringing in my ears you get right before you pass out. I had to sit down on the sidewalk and put my head between my legs to keep from passing out.
I don't know why I suddenly got so dizzy! I didn't feel dizzy when I got off the bus, and I didn't hit my head when I fell. Instead, my back hit every step. I got a nice cut on my elbow and I did something to three of my fingers, thus the trouble typing. They're bruised, sore and swollen.
Someone from our company came by and wanted to know if I was okay. He took my bags and put them in his trunk. He had to help me into the car. At the time I wasn't even sure who he was because the world was spinning. I only knew I recognised his voice.
He dropped me off in front of the office building and I tried to play it off as though everything was okay. But as soon as I started to climb the stairs, I got dizzy again. So, I went and got some tea and sat the deli trying to get over whatever was wrong. It was honestly the strangest thing. I think I just got the wind knocked out of me and I didn't take enough time to get over it.
When Mike, the guy who helped me, got to the office he went to my cube to see if I was okay, and when I wasn't there everyone got worried and the search party was sent out looking for me.
It was not an ideal morning! It was quite embarrassing. And, frankly, a day of typing with a sore hand and wrist hasn't been fun either.
I know I didn't break anything because I can move everything okay. I just feel sore and my hand is swollen so I keep putting ice on it. I feel like I've been beat up! I'm pretty sure I have some nice bruises on my back too. Geeesh!
What can I say, I've never been accused of being graceful.
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With everything going on last weekend, and this week, I didn’t get a chance to say kudos to the folks that were working on HPS fundraisers last weekend.
Last weekend our supporters in Oyster Bay, New York were manning a food booth at the Oysterfest. It’s a fundraiser we’ve done for several years now. I was there (with the rest of the board) the first time we did this fundraiser, and I can assure you it’s two days of solid hard, hard work! A big thank you and kudos to the folks that helped out.
Also, on the very same weekend, the DelVecchio family was having their annual garage sale to benefit HPS. Marie says they didn’t make quite as much money as last year, but they didn’t have as much help this year either. The DelVecchio’s have done this fundraiser for many years now. It’s become something of a neighborhood institution. All year long people drop things off at the DelVecchio house for the annual garage sale. That means that all year the DelVecchios have to store all this stuff! Their attic, garage, etc are full of all this stuff all year. This year they made almost $700. Stop and think for a moment about how much stuff you’d have to sell at a dime to a quarter a piece to make that much money! Thank you DelVecchios for all the hard work and for living with all that stuff all year!
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You’d think by now I would have the expectation in life that things never go according to plan. This weekend I brought home a ton of work. I’m probably under the illusion that if I can just catch up, life will return to normal. If I finish even half of what I brought home today it will be nothing short of a minor miracle.
Friday night I gave myself the night off. Not having a weekend last weekend took its toll, and I really needed some down time. My friend Tina came over and we went to dinner and to Homers. Homers had a guy playing classical Spanish guitar and it was beautiful.
Dinner, however, didn’t agree with me. I was up most of the night. My symptoms have been so much better that I thought I could risk something spicy. Guess not.
Saturday I slept almost all day. I didn’t want to. I kept trying to get up to get some work done, but my head was splitting. My sinuses seem to be acting up. My head hurts, my throat hurts and my teeth hurt.
My body has a way of making me rest when I really need it, and I think that’s what was happening yesterday. My body out voted my brain and I rested very well. Today I do feel better.
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This past weekend was exhausting, but I think it was very productive for HPS outreach. I attended the meeting of the National Society of Genetics Counselors. To be honest, I had a very limited understanding of what genetics counselors did going into the meeting. My own contact with a genetics counselor was limited to a single encounter at the NIH when I was first “officially” diagnosed with HPS. It was a positive experience, but I had the general idea that the role of a genetics counselor was pretty much limited to explaining the genetics of a particular disorder, and how it could be passed on through a family tree.
I’m sure that somewhere there’s a very well thought out definition of what genetics counselors do, but anecdotally I can tell you that the people I met this weekend do much more than draw those little four-square charts on a piece of scrap paper like the ones you might remember from your ninth grade biology class.
The people I met this weekend were extremely well informed about a vast array of genetic disorders that the average doctor would probably be hard-pressed to explain. They help set up genetics testing for people who want to know if they, or their children, are at risk for a particular genetic disorder. They explain the results of genetics testing. They explain the possible implications of genetic conditions. They may also help patients get connected with appropriate treatment when possible. Often different types of cancer are inherited, so they might counsel someone about their risk and response options. Or there might be a family with a child that’s recently been diagnosed with a genetic condition. There are also families that seek pre-natal testing for certain genetic disorders and genetics counselors will work with these families to know what can be tested for in the womb, and what the response options are if the tests are positive.
As you might imagine, these topics bring up all sorts of ethical questions which made for some very interesting sessions as well as casual conversations that sometimes pushed my comfort zone and stirred up my own personal feelings on some of these ethical questions.
But, however I might feel about these issues, the fact remains that many families that have children with albinism are referred to genetics counselors and thus they are in a position to help us get kids with HPS diagnosed early, maybe even as infants. It gives families a chance to stay on top of HPS-related health concerns. That was my mission, and so I remained focused on the mission.
I spoke on a panel for Project DOCC. Project DOCC is another one of Donna’s projects. It’s a program, designed for medical schools, to help medical students better understand what it’s like to live with a child with special medical needs. How does the medical care impact the rest of the family etc? They’re now expanding some of their reach to include adult medicine issues and what it’s like to live with a chronic health condition as an adult.
The opportunity, of course, gave me a chance to talk about albinism, and specifically, about HPS. I was very mindful that this was a group that would encounter people from cross the albinism spectrum, so I tried to differentiate a bit.
Some of the sessions were extremely interesting, even though they didn’t necessarily relate to HPS. There was one about lyposomal storage disorders. One of the presentations was about developments in new technologies and new drugs to treat these disorders. I found the way the drugs worked, the way they “did their thing” sort of speak, fascinating.
There was another session on pre-natal hospice that was very good, but it was very hard to sit through without blubbering everywhere.
Essentially, the talk was about how to help a family that knows their yet-to-be born baby is going to die at, or shortly after, birth yet decides to carry the baby anyway. After all, it’s a bit cruel to send a family in this situation to birthing classes with a bunch of other couples whose biggest worry is the interior design of their nurseries. The session talked about how to help these families prepare for the birth, and the death, of their babies.
One of the presenters was a genetics counselor who specializes in this area. She told the story of one couple who decided to carry their baby, even though it wouldn’t live. They had named their baby girl Hope. The father was a musician, and he’d put together a CD of songs that meant a lot to him through this process.
I lost it. There I was, sitting next to the counselor I’d been paired with for the meeting, trying to hide the tears running down my face and trying very hard to not just start balling very loudly.
The women who read this blog will probably understand that we women are notorious planners. We walk around our bedrooms as little girls with pillow cases on our heads dreaming of our wedding one day. And I don’t know many women who don’t have a few names picked out for future children. I had always wanted to name a daughter, if I ever had one, Hope.
The likelihood that I won’t have kids has been a very, very hard thing for me.
That, coupled with the fact that the lyrics of one of the songs they played reminded me of Victor – and well, it was all over. It was a little more than I could take.
The demographics of the meeting were also very interesting. The attendees were overwhelmingly women, and young women at that – many fresh out of grad school. They were all very friendly and welcoming, which made networking actually pleasant as opposed to awkward. I went to lunch and dinner with several groups, and it was fun.
I was very pleased that the group seemed so open and anxious for patient advocate involvement. After all, if there’s any group of people in the world who should have some non-clinical interaction with people that have genetic disorders, it’s this group of people. GRIN!
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 Here's another picture from the Puerto Rico Conference trip. Pictured here are Donna and Alissara. Alissara is an HPS'er that could use everyone's prayers right now. She's in her late 20s, has two small children, and needs a lung transplant. Her family are incredible. They've had numerous fundraisers trying to raise the money for the expenses that can't be covered by insurance. Like many people that seek a transplant, Alissara will likely have to move away from the friends and places she knows to be near a transplant center willing to work with her. She's one of the brave people paving the way for the rest of us who may one day also need a lung transplant. (Thanks to Dr. Markello who took the picture!)
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I haven’t blogged much this weekend, and might be a little slow to blog this week, because I’m attending a conference of genetics counselors. I’ve got lots to share on that front, but I’d like to be more awake and feeling a bit better when I blog about that. Right now I’m feeling sort of yucky and very tired.
So, we’ll catch up.
Friday was my KUMed day. Whenever possible, I try to schedule all my appointments with different specialists on the same day so I don’t have to miss multiple days of work or pay multiple cab fares etc.
I saw my GI doctor early in the morning. To be honest, I’d almost cancelled the appointment because I felt like I was doing better. But, since I had other appointments and things to accomplish at KU, I decided it couldn’t hurt to touch base with the GI doctor. I’m so glad I didn’t cancel the appointment.
I really like my GI doctor. I mentioned that since I started taking the reflux medication, I haven’t had as much “second sampling” of my food, but I’m still burping all the time. Sometimes at really embarrassing and inappropriate moments a whopper burp – the kind little boys do to be grosse – comes out. He looked at my symptom log and noted that while my diarrhea is improved, it isn’t gone either. So, he wants to do a test for bacteria in my small bowel. If they find something that shouldn’t be there, it’s just a course of antibiotics to fix. No biggie. He said it was common for people who have had ostomies for a long time to sometimes build up bacteria in the small bowel.
So, we’ll be having that test soon I suspect. I still have to schedule it.
Next it was on to my PCP – or rather the person I could get an appointment with at the clinic since my doc wasn’t available. I needed to follow up on the high blood pressure issue, and I didn’t want to make a second trip. It was a great visit. Although the doc I saw had never seen me before (not an ideal follow-up situation) he was very thorough and we seemed to communicate well.
We decided to check my thyroid again to see if the dose increase has made any difference.
I also told him that when my blood pressure really spiked they had told me to stay home, and I’d need a note for my file at work. To make that happen, he needed to consult with my old doctor, who happened to be in that day, as he was the one who had dealt with me that day.
As I sat at the lab waiting to get my blood drawn, down the hall comes my old doctor. He came right up to me, brought me the letter, gave me a hug, and we had a very nice little chat.
He said that some of the responsibilities that were keeping him out of the clinic would be up soon, and it might be easier to get an appointment with him again. I was thrilled. I just really like him. He asked all about how things were going with the HPS Network, and the clinical trial etc.
After I’d sent my e-mail about a year ago, I’d never heard anything back. I had sort of worried that maybe I’d offended him when in actuality I just wanted to let him know what was going on and why I was seeing someone else after he’d spent so much time learning about HPS. It wasn’t that I was unhappy about anything he did – I just couldn’t get an appointment and I felt like I needed some continuity of care.
So, after we had this chance to chat, I just felt so much better about everything. He had understood. Everything between us was okay, and soon I can start seeing him again if I like. I’m a happy camper on the doctor front.
Then I went to visit Annette. She’s doing very well and improving. I was so thrilled to hear it, and to see her looking so much better after everything she’d been through in recent weeks.
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 Here's another pic thanks to Dr. Markello. During the trip Donna and crew visited the School for the Blind in Puerto Rico to talk about HPS. Pictured here are the film crew from Stanford, Hilda our favorite retired nurse from NIH, and Donna.
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The following action request came in today from the American Thoracic Society. As you all know, NIH funding is pretty vital to HPS research. Not only does it affect the clinical trials underway at the NIH, but many of our mouse researchers that don't actually work at the NIH rely on funding grants from the NIH to continue their work. We'd appreciate everyone's support on this.
Action Requested Please contact your Senators by October 17 to request their support for increased NIH funding
The Senate is expected to vote on the Fiscal Year 2008 Labor-Health and Human Services and Education (L-HHS-ED) Appropriations bill, which funds all federal health research and services programs, the week of October 15th. The bill includes a 3.6% funding increase for the National Institutes of Health (NIH) and a 4.0% increase for the Centers for Disease Control and Prevention (CDC). President Bush has threatened to veto the bill because it exceeds his proposed 2008 budget for L-HHS-ED funding by $11 billion, but a strong enough bipartisan Senate vote for the bill could persuade him to sign the bill and preserve health research and services funding increases. ATS members and friends are asked to contact their Senators to request that they vote for the FY08 Labor-HHS-ED bill.
How to Take ActionYou may contact your Senator’s office in Washington by phone using the Capitol Switchboard. Call 202.224.3121 and ask for your Senator’s office or give your state if you do not know their name. When connected to the office, ask for the Health Legislative Assistant.
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Since posting the news item about the Target lawsuit, this blog has been popping up in places on the Internet I never knew existed, and I've been getting e-mails from people I've never met suggesting other news items that may be of interest. I'll pass along some of those as time permits. This one is actually sort of old news - but I somehow missed it when it actually happened. As this is a problem I know I've discussed with some of you, I thought you too might find it interesting. Generally, I can read the screens on ATMs - but I have occassionally had trouble when there's glare on the screen etc. It would be nice to have the option of listening. And just out of curiousity, is anyone aware of anything being done to make other types of kiosks more accessible? I'm really hating, for example, the kiosks at airline check-in. A local store now has do-it-yourself checkout on a lovely light purple vs. dark purple screen. It's hard to read. And, although there's usually at least one check out lane with a real person, it's often really fun to try to figure out which late that is. I have a feeling these kiosks will be invading our lives in ways we haven't even thought of yet. So, if anyone out there has any news tips along these lines - please feel free to send them to hkdawn@yahoo.com. FOR IMMEDIATE RELEASE
CONTACT:John G. Paré Jr.Director of Public RelationsNational Federation of the Blind(410) 659-9314, extension 2371(410) 913-3912 (Cell)jpare@nfb.orgNational Federation of the Blind and Massachusetts Reach Agreement with Nation’s Largest ATM Deployer
Cardtronics Agrees to Make Nearly 30,000 ATMs Accessible
Baltimore, Maryland (June 27, 2007): The National Federation of the Blind, the nation’s oldest and largest organization of blind persons, the Commonwealth of Massachusetts, and Cardtronics Inc., which has the largest ATM network in the United States, today announced a landmark agreement that will make the vast majority of the ATMs owned, sold, or serviced by Cardtronics accessible to the blind by July 1, 2010. The settlement agreement, which ends years of litigation, will cover each and every ATM owned or operated by Cardtronics. Taking into account the five thousand ATMs that Cardtronics plans to acquire from 7-Eleven, Inc. pursuant to an agreement announced earlier this month, the total number of ATMs covered by this settlement agreement will approach thirty thousand. Cardtronics ATMs are located in every state in the U.S. and are found in convenience stores, grocery stores, drugstores, national retailers, airports, and train stations. These ATMs will be equipped with a voice guidance feature that can be activated by plugging headphones into a jack on the ATM. The National Federation of the Blind will monitor the progress of Cardtronics in making its ATMs accessible as prescribed by the settlement agreement. The parties anticipate that the notice, hearing, and approval process required by the court will take three to five months, with the settlement becoming effective late this year.
Marc Maurer, President of the National Federation of the Blind, said: “The ATM is the most common way for members of the sighted public to conduct financial transactions. To be full participants in modern society, blind people must have access to these devices. This agreement represents a monumental step forward for all blind Americans. We look forward to working with Cardtronics to make sure that blind people everywhere can experience the same fast, convenient service that sighted people enjoy.”
Jack Antonini, President and CEO of Cardtronics, agreed with Dr. Maurer and stated: “The settlement of this litigation will permit all parties to focus their attention where it counts, namely on improving ATM accessibility. I share Dr. Maurer’s view that this settlement agreement is a significant milestone and am proud that together with the National Federation of the Blind, Cardtronics will be a leader, not a follower, in improving ATM accessibility.”
Massachusetts Attorney General Martha Coakley said: “With today’s technology, there is no reason that every ATM shouldn’t be outfitted with this equipment as a means to comply with access requirements. This agreement will result in blind consumers across the country having improved access to one of the most basic devices that we take for granted.” The 1990 Americans with Disabilities Act required ATMs to be made accessible to the blind. Large financial services institutions such as Bank of America have been installing ATMs with a voice guidance feature for many years, but ATMs installed in convenience stores, drugstores, airports, movie theaters, shopping malls, and other places have not kept pace with this trend. To remedy this situation, the National Federation of the Blind and the Commonwealth of Massachusetts brought suit against E*Trade Bank and E*Trade Access. In June 2004, E*Trade sold its ATM portfolio to Cardtronics, Inc., which is now the largest deployer of ATMs both in the United States and in the world. This landmark agreement is the culmination of that litigation. Today Cardtronics ATMs primarily provide customers with basic financial transactions such as cash dispensing, but Cardtronics is exploring the addition of advanced functionality features to many of its ATMs so as to enable the consumer, including the blind consumer, to make image deposits, pay bills like a utility or cell phone bill, transfer money, cash checks, and perform similar financial transactions at the ATM. The agreement requires that all consumer transactions on U.S. deployed Cardtronics owned ATMs must be able to be performed independently by the blind.
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About the National Federation of the Blind
With more than 50,000 members, the National Federation of the Blind is the largest and most influential membership organization of blind people in the United States. The NFB improves blind people’s lives through advocacy, education, research, technology, and programs encouraging independence and self-confidence. It is the leading force in the blindness field today and the voice of the nation's blind. In January 2004 the NFB opened the National Federation of the Blind Jernigan Institute, the first research and training center in the United States for the blind led by the blind.
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 I'm a sucker for baby pictures. Here's Dr. Markello with the littlest conference attendee. When we do all the things we do towards finding better treatments, and someday hopefully a cure, just remember we're not just doing it for us. These little kids will have very different lives because of the work of great doctors like Dr. Markello, and all of our other researchers. Their work is possible because of great patients like all of you. It's a cooperative effort. We're all in this together.
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