ABC News Feature on Positive Exposure and other summer excitement

Cornelia de Lange Syndrome Conference

Summer is always a busy time for Positive Exposure. From June to August PE makes the rounds of the genetic support group conferences, some of which are like family reunions with many familiar faces, and others of which, like the Cornelia de Lange Syndrome group, are new to the PE family. Check out the new gallery with many beautiful faces from the Cornelia de Lange Conference last month.

Rick has already been so busy this summer, returning from Russia and immediately visiting several support groups stateside, that he hasn’t had time to update….so this is a post from Kim, PE staff member. We recently returned from the Chromosome 18 Conference in San Antonio Texas, which was full of beautiful kids and thought-provoking discussions. Stay tuned for a longer summary of that conference and a link to the new gallery.

The hot news for today is the ABC news feature on Positive Exposure: Fighting the Stigma of Albinism. This is part of ABC’s focus on people living with albinism in Tanzania. The slide show of Positive Exposure images makes a strong statement about the individuality and possibilities of people with albinism–in October Positive Exposure will bring that vision to Tanzania with the help of a team of supporters.

More conferences coming up, as well as updates about Tanzania.

–kim

MOSCOW

Hello from Moscow: Monday 23 June:  After the 12 hr flight, I was met by a camera crew filming my arrival at the airpor in Moscow. (no hair or make-up team to help me look my best) We then traveled to a wood workshop to frame the exhibit for opening night Tuesday … Very exciting!!! More later. Today is Tuesday 24 June, I will see the Kremlin and hopefully meet lots of kids with albinism. I’ll keep you all posted and will send pics.

About 6 years ago, I was in Paris and met the wonderful family of the president of GENESPOIR, the albinism support group in France. The family, Marie, Florian and Antoine all have albinism and were amazing to photograph and spend time with. I have not seen them since but have stayed in touch over the years with Marie. I received an e-mail from Antoine, the oldest, and he is here in Moscow and we will catch up tonight at the exhibition opening at Fotoloft..  AWESOME!!

Updates

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!

Better late then lenny

Originally uploaded by P_E

Ed Dalton in chicago

Originally uploaded by P_E

Brooke in Chicago on an iPhone

Originally uploaded by P_E

Brooke Fox performing at NOAH benefit in Chicago

Originally uploaded by P_E

PE in Australia

	Such an amazing trip. We began in Sydney for the Chromosome 18 Conference hosted by Marlene and Scott Brightwell with their stunning daughter, Erin.(left)
	Then traveled to Brisbane to give a presentation at the Powerhouse Museum, sponsored in part by Brisbane’s Access Arts. Following PE presentation, Veronica Wain had a screening of her documentary about her gorgeous daughter with 18 q-, Alycia. (below)

Then we traveled to Adelaide for the AFA 2008 Albinism Conference in Glenelg…

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Now, I am in the Blue Mountains and had a fantastic hike first thing this morning.

Kim, Annette and me in Adelaide

Originally uploaded by P_E

Exhibit at University of Texas Science Center Library

Originally uploaded by P_E