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October 2009 - Posts
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 Christina McGillicuddy, 9, saw an opportunity when her grandparents recently held a yard sale in Longmeadow, Mass. She held a bake sale at the event and raised more than $80 for the HPS Network. Christina’s mom helped bake a selection of cookies, breads, muffins and brownies – all priced between 50 cents and a dollar. The day of the sale Christina ran the bake sale and sold the items herself. She educated every customer about HPS and sent them home not only with something good to eat, but an HPS brochure to learn more about the people they’d just helped with their purchase. Way to go Christina!!!!
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This was mentioned in the National Organization of Rare Disorders newsletter. Just thought I'd share it if anyone's interested. Online Talking Glossary of Genetic Terms
The National Human Genome Research Institute has launched the next generation of its online Talking Glossary of Genetic Terms. The glossary "talks" because users can actually hear an audio pronunciation of each term, and also listen to an audio explanation from scientists who provide context and other supplementary information. The updated glossary gives students, teachers and the public a reliable online resource for more than 200 terms and basic concepts behind today's breakthroughs in genetics and genomics. The glossary is available at www.genome.gov/glossary .
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Albinos under Burundi police protection welcome Napoleon (age 1 week)
28 Oct 2009 09:18:00 GMT 28 Oct 2009 09:18:00 GMT ## for search indexer, do not remove
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Source: International Federation of Red Cross and Red Crescent Societies (IFRC) - SwitzerlandBy Alexis Manirakiza in Ruyigi, Burundi
Website: http://www.ifrc.orgReuters and AlertNet are not responsible for the content of this article or for any external internet sites. The views expressed are the author's alone.
The picture shows Napoleon Ahishakiye, an albino baby born on Thursday 15 October 2009 and as far as anyone knows the first albino birth in a shelter, with his 18-year-old albino mother, Emelyne Banteyineza. (Photo: Alex Wynter/IFRC) (p-BDI003) Napoleon Ahishakiye, a healthy boy, was born on Thursday 15 October 2009 - as far as anyone knows the first albino birth in one of the shelters still scattered around the eastern Burundian province of Ruyigi, near the border with Tanzania.
After the occult-based killings began here in August last year, the Ruyigi local authorities had to resettle 60 albinos in secure locations the police could guard.
And there at least 20 remain, including Napoleon's albino mother, Emelyne Banteyineza, 18, who sits in the shade next to her grandmother, Candide Ntawenganyira, who is black and estimates her age at "about 70".
Emelyne has seven siblings, including one other albino. Candide, whose own parents were black, says she puzzled for a while about the sudden emergence of albinism in the family, then decided "it's God's will" and dismissed the issue.
Candide, whose Kirundi name translates as "I have no one to take my worries to", is clearly too delighted with her new great-grandson to think much about the shadowy albino-hunters - working for big-money buyers in Tanzania, most Burundians believe - who have killed 12 people in Burundi and caused the displacement of many others in several provinces.
To read more go to: http://www.alertnet.org/thenews/fromthefield/218536/125672168994.htm
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Tomorrow and Saturday the DelVecchio family will be holding their annual garage sale to benefit HPS. This sale has become quite the event in their neighborhood. People donate items for sale all year, and the DelVecchios manage somehow to store them in every nick and cranny they can find - from the garage to the attic.
Say some prayers that the weather is nice, and the customers aren't too stingy. Grin!
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 I have so much to blog about from HPSland, but it's been a very busy few days. In the meantime, I'm trying to get through the last of the vacation pics. Here's another from Beauty and the Beast.
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The following news story ran in Staten Island. Look past the snow shoveling for seniors. What a great way to get lots of crafts to sell at upcoming HPS events. Way to go! I'm pretty sure the Diaz family is behind this effort - this is their neck of the woods and I'm pretty sure Liz said something about it. I've just been a space cadet with everything going on these past few days. Here's the story - and don't forget - every craft counts! Snow-bound seniors need help from shovel-ready teens
Thursday, October 22, 2009
Staten Island Advance
STATEN ISLAND, N.Y. -- While weather forecasters are dithering over how much snow we will get this winter, 2,500 seniors have been busy signing up for Where-To-Turn's Snow Shoveling For Seniors program.
Now, students are needed to shovel those walks when the first snow flies.
The seniors are residents of communities all over the Island. Students -- seventh-grade through high school -- should be able to work within walking distance of home.
Volunteers commit to shovel one home each time it snows. Student volunteers will receive 10 hours of community service credit. Volunteers under the age of 18 will need a consent form from a parent or guardian. Contact Where-To-Turn at 718-966-6531 or www.where-to-turn.org.
CRAFT A CONTRIBUTION
Kids Gone Giving, a program begun by Elaine Gil of Grasmere and owner of Bubbles Playhouse, requires young participants to do one good deed a month.
The October project is focused on making crafts that will be sold at fund-raisers to help support research for (HPS) Hermansky Pudlak Syndrome. You can make the crafts at home and bring them into Bubbles Playhouse on Tuesday between 6 and 7 p.m. or you can go to Bubbles Playhouse at 6 p.m. on Tuesday to make some crafts (no fee). Materials will be available, but bringing your own or donating crafting material is appreciated.
Bubbles Playhouse is at 2102 Clove Rd., Grasmere. For more information, call 718-447-7779 or visit bubblesplayhouse.com.
Hermansky-Pudlak Syndrome (HPS) is a genetic metabolic disorder that causes albinism, visual impairment, and a platelet dysfunction with prolonged bleeding; it can involve other conditions. The severity of HPS ranges from very mild with few symptoms to severe and disabling. There is no known cure for Hermansky Pudlak Syndrome. For more information, visit the Web site www.hpsnetwork.org.
RAINDATE
The nor'easter pushed the Conference House Halloween Harvest Fair back to this Saturday and volunteers are still needed. Set-up is 8:30 to 11 a.m., breakdown is 3 to 4 p.m. Children's activities run between 11 a.m. and 4 p.m. To volunteer, contact Susan Fowler at 718- 984-6046 or info@conferencehouse.org.
Helping Hands is a clearinghouse for nonprofit groups in need of volunteers. Agencies needing help may direct press releases to "Helping Hands," Staten Island Advance, 950 Fingerboard Rd., Staten Island, N.Y. 10305 or e-mail shores@siadvance.com.
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The following is a call-to-action sent out by NORD - the National Organization for Rare Disorders. This is a big issue for many in the HPS/CHS community. Many HPS'ers have large medical bills over the course of years and years. Most insurance offers up to a millon worth of medical coverage. That might sound like a lot, but trust me, with the cost of health care today, it isn't hard to meet that cap. If, for example, you need a lung transplant the surgery alone runs about $300,000. That doesn't include pre-op workup and care or post-op anti rejection drugs.
Many HPS'ers require expensive medications such as Remicade at $10,000 an injection every six to eight weeks. Couple that with other complications as life goes on, and once again, the bills start adding up fast.
If you feel so moved, please call your Congressional representative and ask them to sign onto this letter to abolish insurance coverage caps sooner rather than later.
Here's the info:
Please share the following with your members:
As you read this, key Congressional leaders are behind closed doors determining what YOUR healthcare options will look like next year.
The time to act is now, by joining NORD and its Member Organizations in the following:
· Call the switchboard of the U.S. Congress at (202) 224-3121 and ask for your Representative’s office.
· Ask your Member of Congress to call Rep. Patrick Kennedy’s (D-RI) office to sign on to his letter to abolish lifetime caps.
· If you live in North Dakota and have been affected by lifetime insurance caps, please share your story with Senator Byron Dorgan (D-ND). Sen. Dorgan may also ask the Senate to abolish lifetime caps and will need these stories to explain the issue to his colleagues.
You can use the following phone script in your call to your legislator.
And…remember…the ultimate authority of the U.S. Congress to act resides in YOU! Together, we can make a difference!
PHONE SCRIPT:
Good morning/afternoon. My name is _____________________ and I am a constituent living in (city, state). I have a rare disease.
I am calling to bring to your attention a letter that Rep. Patrick Kennedy is circulating in Congress. This letter calls for the immediate abolition of lifetime insurance caps in the House health care reform bill, HR 3200.
As this bill is currently written, patients may have to wait up to nine years after reform is enacted to see those lifetime caps eliminated. People like me who have rare diseases face possible financial ruin if lifetime insurance caps are not immediately abolished. This issue is very important to me.
Will Representative (insert name of your Representative) sign on to Patrick Kennedy’s letter?
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Yes, I know, I haven’t blogged much in the past few days. I’ve been rather busy! Over the weekend and into this week I attended the American Academy of Pediatrics with Gina and Hilda from the HPS Network. We partnered with a group from NOAH (National Organization for Albinism and Hypopigmentation). It was a great chance to get to meet some others in the albinism community I didn’t really know much about before. Chris Meyers was the muscle, constructing the booth and tearing it down again. (Thank you Chris!!!!) We had several moms with children that had albinism, and another adult with albinism named Liz.
I know you all won’t believe it, but in the chaos of putting together my new office, I left my camera on my desk at home. I can’t believe it!!!! However, photos will follow as thankfully some of the NOAH folks had their act together and brought cameras.
NOAH promoted their new book on raising a child with albinism as well as their rapid responder program for families with a new albinism diagnosis. The HPS Network promoted screening for HPS for children with albinism.
I was very grateful, if not somewhat surprised, at how receptive the doctors were to the idea. When they learned the test was a blood draw, and that it was free – no one argued with the idea. I know so many families run into trouble when they go to their doctor to be tested for HPS. I think perhaps when the doctors haven’t heard of the syndrome, they are less likely to take it seriously. I hope that by providing just a little bit of information, as well as a handout about the Dr. White test, that it will make it that much easier for some families in the future to get an accurate and early diagnosis.
Of course, the day after the show I pretty much fell apart. I seem to do this – I run like an energizer bunny until I just can’t anymore and then just crash. It’s a reminder, a frustrating reminder, that I just don’t have the stamina I once had.
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Today is the last day to vote for the HPS Network to help us win up to $10,000! Vote for the HPS Network at: https://www.christiecookies.com. The top 10 charities will win between $1,000 to $10,000 for their cause, depending on who has the most votes. Please enlist your friends and famly to help as well.
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