May 6, 2012

Check this out when you have a minute. Such a blast!!!



The Invite

April 19, 2012



Panama City!

April 19, 2012

Hello everyone: A crazy schedule indeed. Currently in Panama City with an exhibition opening this evening at the Alianza de Panama. The exhibition will focus on the Kuna, now Guna, in the San Blas with albinism. The incidence of albinism worldwide is approximately 1-20,000, with the highest incidence here among the Guna: 1in 125. The show looks great and I hope to include the larger disability community here in Panama in future programs. 


I’ll send pics from the opening. Heading to San Blas region on Saturday to bring images back to Guna Yala and create additional partnerships.

Our thoughts are to create a larger exhibition that will include many positive exotic elements to our campaign addressing the murders and attacks on the albinism community in East Africa.  


Positive Exposure Public Exhibition, Fashion week, NYC!!!!!!!

March 26, 2011

Hey Everybody: Positive Exposure needs your voice and we need it NOW! We would like to have an outdoor PUBLIC Exhibition of Positive Exposure during fashion week here in NYC, giving everyone the opportunity to see and celebrate the beauty of difference! The exhibition will then move to cities around the country! Is this a great idea? Why is this important?  What do YOU think? Your voice and your response will make this happen!!!!


March 2011: The Pearls Project!

March 18, 2011

Positive Exposure is creating an exhibition to target High Schools throughout the nation. Our goal is to provide opportunities for students to see beyond differences and embrace our shared humanity.

The exhibition will feature several teen photographic models living with a variety of genetic conditions with each image identified by first name only. The student visitors will have opportunities to read about the photographic models themselves and their lives through a safe Positive Exposure controlled informative blog. Each model will commit to blogging about their everyday lives twice a week for the duration of the project (4-6 weeks)

Students are encouraged to get to know the models featured through the blog and keep a journal recording their new discoveries.

The host school is encouraged to create curricula based on the exhibition and across disciplines of education including Creative Writing, Music, Art, Photography, Philosophy and Science classrooms.

By inviting high school students to see young people living with genetic difference through Positive Exposure’s life-affirming lens as well as hear a collective of voices so often compelled into silence, it is hoped that high school students will gain a deeper understanding and respect for the many differences in the world around them. This is going to be AMAZING!!!!!!!

A few of our bloggers:

The program in in its Pilot Phase and We’ll keep you posted:

In the meantime: Check out our new Kartemquin movie trailer: http://www.youtube.com/watch?v=3zOPXTusNik

Also: Have a look at our ON BEAUTY Website: Blog us something!!!



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.


May 25, 2010

Kids in Shinyanga School.

Just arrived back to Dar es Salaam from Shinyanga. Amazing trip, amazing people. We visited a school where several families from the region are sending their kids with albinism for protection. These kids are so isolated and are aware that they arent safe in their homes. It’s agony to see them surrounded by the beauty of Tanzania, fear and segregation. Through all this pain, there is still, undeniably, hope in their eyes. We also visited with Kabula, a 13 year old girl who less than a month ago was attacked while she slept with her mom and had her arm chopped off. She was terrified to meet our  team, rightfully so, but allowed us to interview her. Im back now in Dar and having dinner with the Under the Same Sun team. There is so much to do.. My thought to proceed is to implement eduction programs that will engage entire communities to be vigilant and protect these kids. PE exhibits and lectures by PE empowered students and health care providers in training is how we need to begin. Hope is not only in the eyes of these babies but in all of our hearts. Photos will be added later when the internet connection is stronger. xxRick


A beauty!

Fetching water!

Mother of 12 with five living with albinism. Seeking protection here at the school.

Sleeping beauty!


Kabula at the hospital.