Skip to main content

HPS Quest for Crafts makes the news

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.

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.

Help for one of our newest HPS friends

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