Skip to main content

Drive to help those in Tanzania

The HPS Network is planning to hold a drive at its annual conference, March 19-21, 2009 in Uniondale, NY to help the Canadian non-profit, Under the Same Sun gather items for people with albinism in Tanzania.

People with albinism in Tanzania have lived under threat for several years now, thanks to witch doctors who claim they can create powerful potions to create wealth from the body parts of people with albinism. For decades the graves of people with albinism were robbed to make these potions; however, now the witch doctors have claimed that parts from live human beings are more effective. They even claim that body parts from babies or small children hold the most power.

More than 50 people with albinism have been murdered in Tanzania in recent years, and more have sustained horrific injuries.

Many people with albinism in Tanzania are staying in safe zones at area schools so that they can be better protected. People with albinism in Tanzania have little if any access to sunscreen, sunglasses or hats. Many die at an early age from preventable skin cancer.

As a result the HPS Network, as part of the global community of people with albinism, hopes to gather the following items at our annual conference. Items will be given to Under the Same Sun (UTSS). This organization, founded to help people with albinism in Tanzania, has been able to establish a reliable method to get donations into the country that will reach the people in most need.

Items to be collected include:

For your information, UTSS can only accept the following items for shipment to Tanzania (PLEASE NOTE THAT CLOTHING, HATS AND SUNSCREENS MUST BE NEW):

• WIDE-BRIMMED HATS – children's/youth sizes are needed most. (Unfortunately, baseball caps cannot be accepted as they do not provide adequate sun protection.)
• SUNGLASSES– can be “used”, but must be clean and in good condition.
• SUNSCREEN LOTION - must have a minimum Sun Protection Factor of 35 – the higher the SPF, the better. All bottles must be new and unopened. Please place each bottle in a zip-lock bag and seal it before it is mailed/shipped (this reduces chance of leakage during transport). • LONG-SLEEVED SHIRTS – must be light-weight and definitely LONG-SLEEVED. No T-shirts or short-sleeved shirts can be accepted. Light colors are best as they reflect the sun.
• SCHOOL SUPPLIES – pens and pencils ONLY. Due to weight, the cost of shipping paper and books is too high. It is better for the schools to obtain paper and books locally in Tanzania. • MAGNIFIERS – small, hand-held magnifiers are accepted.

PLEASE NOTE that UTSS does not accept battery-operated “flashlight” magnifiers or stand-alone desk magnifiers. UTSS is also unable to accept prescription lenses/glasses/spectacles of any kind for delivery to Tanzania. The HPS Network invites you to either donate the items directly to UTSS, send them to the HPS Network or bring them to the conference in March.
UTSS addresses are: US mailing address:


Under The Same Sunc/o Mike's Parcel Pickup 183 W. Stutsman StreetPembina, ND 58271-4100

Canadian mailing address:
Under The Same Sunc/o Multicultural Family Centre51 Morrow AvenueWinnipeg, MB R2M 1A5

Comments

Popular posts from this blog

Ratner's Cheesecake

Here's another recipe from Toby! Thanks Toby......and I'll get the others posted soon! Ratner's Cheesecake and plain cookies Ratner's was a Jewish dairy restaurant in the lower East Side of Manhattan. This recipe, from my disintegrating, no longer in print Ratner's cookbook, is the closest I've ever gotten to reproducing the rich, heavy cheesecake my mother made when I was a kid. It's worth the time it takes to prepare and every last calorie. Dough Can be prepared in advance. Makes enough for two cakes. Can be frozen or used to make cookies – see recipe below. 1 cup sugar 1 teaspoon vanilla extract 1 cup shortening 1 teaspoon lemon extract 1 cup butter 2 eggs 3 cups sifted cake flour ½ teaspoon salt 2 cups all purpose flour 1 teaspoon baking powder 1. In a bowl, combine all ingredients with hands. Refrigerate 3 -4 hours, or preferably overnight. Filling (for

The next generation with Hermansky-Pudlak Syndrome

I'm so behind on posting about the trip to Puerto Rico. Since the episode of Mystery Diagnosis on Hermansky-Pudlak Syndrome ran right after we got home, it's been a little busy. These, however, are my favorite pictures from Puerto Rico. I know, not pretty senery etc - but these little guys and gals inspire me. They are the next generation of folks with HPS, and if we keep up the hard work, they will live better lives because of it. They motivate me.

Some good news about Pirfenidone

Below is a press release from Intermune, the company that makes Pirfenidone. They have essentially reviewed the various clinical trials going on, and decided that Pirfenidone is safe and well tolerated. That would pretty much go along with what we've observed in the HPS community as well. We have a few folks that have been on the drug since the late 90s and continue to do well. Of course, as a journalist, I do have to say consider the source - but at the same time, as someone in a Pirfenidone trial, it's good to know. Results of Comprehensive Safety Analysis of pirfenidone In IPF Patients Presented At European Respiratory Meeting - Analysis shows safety and tolerability of pirfenidone across four clinical trials - VIENNA, Sept. 14 /PRNewswire-FirstCall/ -- InterMune, Inc. (Nasdaq: ITMN ) today announced that the results of a comprehensive review of safety data from four clinical studies were presented at the 2009 European Respiratory Society Annual Congress in Vienna, Austria