Summer 2010 AMAZING!!!!

August 6, 2010

Such an amazing summer so far. Ive pretty much been on the road since late June. Back in NYC at the moment. Here is a glimpse of the whirlwind tour!

Pallister Killian Syndrome


Thu, June 24 – Sun, June 27

Where: Mt Laurel NJ

Marfan Conference


Thu, July 8 – Sun, July 11


Chromosome 18 Conference


Sun, July 11 – Wed, July 14

Where: Tulsa

Mountain States Genetics Foundation’s Annual Education Conference

Wed, July 14 – Thu, July 15


Nobody took my picture here. But this is just as good:

You will be receiving a formal letter of appreciation, but I do want to again thank you for taking the time to come to Denver and present. Everyone adores you and your work!

and we are always so glad to have you join us. As expected, so far all comments are extremely positive. We’ll be in touch soon.  Take care and keep us posted of your work.  We are in process now updating the 2011 strategic development plan, and I am hopeful that we can find ways to collaborate and support your work in the year ahead.

Kind regards, Susan M. Bryan

President, MSGF Board of Directors



Thu, July 15 – Sun, July 18


CH 18 Europe: First Conference EVER!!!!!!

Fri, July 30 – Sun, August 1, 2010

Where: Glasgow

DM Myotonic Dystrophy: STAY TUNED!!! The conference is next weekend!

Fri, August 13, 2010 – Sat, August 14, 2010


I also wanted to add an e-mail from our amazing Jayne Waithera who is starting up Positive Exposure Kenya to raise awareness and fortify our community in Kenya to protect our brothers and sisters with albinism! Jayne was there representing Positive Exposure but was also the recipient of The Innovation Award for the Empowerment of Women and Girls! We are all so proud of Jayne. She rocks!

Ghana has been very busy but also interesting meeting young African women leaders from 21 African countries. I have really learnt a lot and this is a great asset for for PE Kenya.
I have also managed to build networks with other regions, I also did a lot of presentation about albinism and my role in PE Kenya and most people have expressed interest in incorporating albinism issue in their projects.
In Ghana I managed to meet most renown human rights activists and I have done  a lot of  sensitization on our issues.
Side note(I met Her Excellency Mary Robinson former Ireland president and she was really impressed by the cause I’ve taken she said’” That’s a very great initiative  as many people around the globe are ignorant about albinism all the best”).
You remember the twelve year old boy from Ghana? I met the mother initially and when she told me the story I suggested to  go see the boy at home which I did on Sunday 25th july. This remains one of my greatest achievements so far. I  talked to the whole extended family   from the basics concepts of albinism and  some cultural believes surrounding albinism. The most intresting one was that the whole family believed the boy was born with albinism because the mom ate some sort of beans which the boy was never allowed to take for the last 13yrs. But on this day I broke the taboo by myself feeding on the same beans and giving it to the boy and all this little boy could say was “You are great!” it was really hard to convince them but I made it. Infact we agreed on him having beans  twice every week and the mom says she is doing well. Ill send you a detailed reports on the findings.
OOoh dear lemmie pause   there is much needed  … but we are heading somewhere..
Attached please find photos of the BIG DAY  in the boys family house.



  1. Your photographs are awesome…my granddaughter has albinism…I am pleased that you have chosen to give this condition so much “positive exposure.”

  2. I can’t tell you how impressed I am with your project and insight. I don’t mean impressed as in “oh wow”, rather, you have made an impression on my heart. What an incredible and positive use of your talents. There is so, so much to learn here…

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