Skip to main content

Calling all of those with albinism in Chicago!

The Vision of Tomorrow is a foundation that works to fund albinism research as well as support the albinism and low vision community in other ways. They've been a supporter of the HPS Network, for example. They have an upcoming family event/fundraiser in the Chicago area. It sounds like a lot of fun! Here's the e-mail I was sent yesterday.

Dear Friends:

As many of you know, we are the founders of the Vision for Tomorrow Foundation. Our daughter, Tess, is visually impaired. We started this foundation to better the lives of those with low vision through research, education and public awareness.

Attached is the invitation to our first big event! This is a 2-day event – August 23rd and 24th. There will be a 3-on-3 basketball tournament (Saturday all day and Sunday morning) and a Family Carnival (Sunday 1-4 p.m.) There are a lot of details but please note the following: Tournament players will be bracketed with appropriate age groups and 6-8th graders will ONLY play on Sunday. Tournament registrants will be notified of their playing times via email during the week of August 18th.

We have also attached a registration form which you can print, fill out and mail in. If you prefer to register online, a form is available on our web site –
www.visionfortomorrow.org. Please register soon as space is limited!!

Again, thank you so much for your continued support. We look forward to playing basketball, dancing, and celebrating with you in August!

Thanks-
Susan and Jon Ballis
Directors, Vision for Tomorrow Foundation
655 Deerfield Road
Suite 100-#130
Deerfield, IL 60015-3241
847.877.9007
susan@visionfortomorrow.org
www.visionfortomorrow.org

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