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Updates

June 15, 2008

Sorry for the time elapsed since last blog… So much is going on.. Recently received the Dorthea Dix award from from Elwyn Genetics at Bergdorf Goodman’s in NYC. Fantastic night and such an honor.. Brenda and Barbara at Elwyn are amazing women and are so supportive. Thanks.

Also, I am sure you are all on top of the atrocities going on in Tanzania with people living with albinism.. I am planning to travel with a friend and colleague, Peter ASH, to address these issues there in October. PE presence will raise awareness thru a lecture series as well as presenting an exhibition of people living with albinism worldwide.. We will also create a book similar to REAL LIVES for the Tanzanian community. I will be there representing POSITIVE EXPOSURE, NOAH and THE ALBINISM WORLD ALLIANCE.

I am in LA at the moment and will meet with the PE grant writer, Myra, to strategize on financial support and the development of our program, Positive Ties. (I’ll discuss this program at a later date) The University of MD Medical School has been so supportive of Positive Exposure, that we are growing in huge spurts.. Mimi Blitzer is a rock star! We have 2 wonderful medical students this summer Heather and Kathleen that will shake things up!!!! They will focus on our database and archive as well as working directly with people living with genetic conditions to create a dialogue targeting med students…

On Saturday, I am going to Boston to work with kids living with SPINAL MUSCULAR ATROPHY.

These kids are amazing and my last visit produced many out of focus photographs because the kids, many in wheel chairs, spent the entire family conference trying to run me over.. It was a blast and I cant wait until saturday.

After flying back to NYC on Saturday evening, I will then re-pack and fly to Moscow on Sunday.., I have been invited to exhibit at a gallery “FOTOLOFT” . We will use this opportunity to mobilze the albinism community to create a support group and raise public awareness about albinism in Russia. This will be my first visit there and I am thrilled to have this opportunity.. Stay tuned for live updates from MOSCOW!! That’s all for now!

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2 comments

  1. Wow, you are busy! I came across this site because I have a google alert on sma. My son has sma and you will be with alot of our friends this next week. our children are so special and i thank you for taking time to be with them!

    jana, mommy to Kyle(bug), 3 1/2, sma type 1


  2. Hey Rick, Glad to hear you’ve been so busy. Some of the folks on the HPS listserv were wanting to know if there’s anything that can be done to help the folks in Tanzania. Let us know. Thanks!



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