Leading the Way: Positive Exposure

At the Rare Genomics Institute, we understand that enacting change cannot happen unilaterally and that solving medical mysteries does not come without teamwork. We stand proudly at the forefront of the utilization of genomic sequencing for the purpose of identifying, treating and hopefully curing rare diseases. At the same time, we realize there are many other people outside of our organization who are just as fundamental to the fight against rare diseases as we are. The team at RG is inspired by those who dedicate their lives to helping others affected by rare disease. Here is one of their stories:

Change how you see; See how you change:

Too often society focuses on diseases rather than the people who have them. Rick Guidotti's mission is to change that. For years, as a fashion photographer for publications like Elle, Harpers Bazaar and GQ, Rick was commissioned to photograph people who fit societal standards of beauty.

Now, as founder and CEO of the non-profit Positive Exposure, Mr. Guidotti aims to alter society’s perception of beauty by photographing those with diseases in the same way that he used to photograph supermodels.

On a cold January afternoon Rick invited me to his non-profit's studio office in New York City. Upon entering the space, it is impossible to look away from the large, vibrant, glossy photos on the walls. Rick's depictions draw you in and force you to live in the moment of each photo. The only thing tearing me away from getting lost in the images was Rick's enthusiasm about them.

Positive Exposure has been featured on NBCNews, in a documentary titled On Beauty (Kartemquin Films) and most recently as part of an exhibit at the Museum of Tolerance in Los Angeles, CA. Rick has spoken at medical schools and has given a TEDtalk as part of his passion project, and it is apparent in speaking with him that Rick has not lost sight of the importance of his work.

Describing the encounter which led him in this unique direction, Rick is candid, “I see beauty everywhere as an artist. Walking down Park Avenue, after a casting for a magazine spread that I was shooting, I saw a kid waiting for a bus with albinism. She didn't have pigmentation in her hair, her skin or her eyes. I was so excited because there was this beautiful kid, yet (she had) never, ever been included in (the) beauty standard.”

A lack of positive imagery on the subject of people with albinism drew Rick further into his work, “I found images of kids up against a wall in doctor’s offices, naked usually, with black bars across their eyes…It was so mind-blowing that this beautiful kid never inspired anything but this negativity. I couldn't find one positive image.”

So rather than find positive images, Rick was moved to create them. Through a partnership with the National Organization for Albinism and Hypopigmentation (NOAH), Rick’s first photos for Positive Exposure were snapped. His work with NOAH ultimately led to a photographic essay which would later be featured in a Life article titled, Redefining Beauty.

His first encounter in a studio with an albino model solidified Rick’s inspiration, “It was really apparent that this kid had zero self-esteem as a direct result of the bullying, the teasing and the abuse she experienced every day in school. She was breathtakingly beautiful, yet she didn't see it. She needed to change the way she saw herself.”

It was in that moment when Rick crafted the motto of Positive Exposure, “Change how you see; see how you change.” This message has now been cultivated through images of people with a wide variety of diseases, not just albinism. Rick has held his lens in front of people with Marfan’s Syndrome, people with a Chromosome 18 Anomaly, those suffering from Potocki Lupski Syndrome, and many, many others.

He photographs mostly children and young adults who suffer from rare diseases, but Rick also photographs those children’s families and friends. Positive Exposure is as much about capturing the joy and happiness of little moments in people’s lives as it is about raising awareness of the many differences among us.

In our next post, we will follow up with Rick Guidotti about the specific programs his organization has implemented. In the interim, please note that the Art Director's Club in New York City will host Positive Exposure's Spring Gala from April 5th through the 12th. The event will include interactive exhibits with a full complement of Rick's photographs as well as community talks. The movie On Beauty will be screened and a book containing much of Rick’s work will be debuted during the exhibition.

Check out Part Two of our conversation with Rick here.

Emory Rare Disease Webinar: The Role of Patients as Chief Advocates

The Emory Genetics Laboratory, who RG is partnering with on their "I'm Rare" campaign, is hosting a webinar that discusses Rare Disease Day and what patients can do to advocate for their conditions. Click here for more info and to register!

RG Podcast: Advice on Starting a Non-Profit

Thinking of starting a website or non-profit organization, perhaps for a family member’s rare disease? Check out this podcast from RG’s Executive Director, Paul Schindler, on what to consider in the process.

Crowdfunding for Personalized Medicine Research

Check out this article by two RG staff in the Yale Journal of Biology and Medicine! They discuss RG’s experience in successfully partnering with companies to raise money to support rare disease research, an area of study that is chronically underfunded.

22 Days of Giving

Our year-end campaign, 22 Days of Giving, was a great success, earning over $15,000 to help fund diagnoses, treatments, and cures for rare disease patients. Click here to read details on some of the patients RG has helped!

The Impact Of Rare Disease Research On The Development Of New Medicines

Karla Lant of Rare Genomics Institute recently contributed to Clinical Leader with the article The Impact Of Rare Disease Research On The Development Of New Medicines.

"When we consider rare disease research and apply a cost-benefit analysis, it becomes clear that the benefits of this kind of research far outweigh the costs. Unfortunately, though, too often this kind of assessment stops short; only the immediate benefits of the research are considered. Discovery of possible cures, treatments, or preventative tools for the diseases in question are generally thought to be the only benefits..."

Read the full article >

Rare Genomics founder on Orphan Drug Law

Johns Hopkins accuses drugmakers of 'gaming' orphan drug law
Report urges Congress to cinch up loopholes it says are bleeding away development funds

But not everyone sees the situation as drugmakers extracting big bucks through loopholes. Jimmy Lin, founder of the Rare Genomics Institute sees it as drugmakers taking advantage of the advances in genomic science that has helped them understand how their drugs can help more people.

"Everyone wants to find a rare disease that can also be used for a majority of the population," Lin told CNBC. "Many blockbuster drugs started off as rare indication. If you have something working for one disease, you want to try it for others as well. The drug pipeline for common diseases is drying out, so pharma companies are trying to get creative here."

Read the article here >

RG Presents at 5th U.S. China Health Summit

We are proud to announce that RG’s China branch will be presenting as finalists at the Award Ceremony at the Young Leadership Forum of the 5th US-China Health Summit at Harvard University on Sept. 29. RG’s China branch was selected from more than 30 exceptional healthcare startup teams in the initial round of the 2015 Innovation Competition on the U.S. side, and together with additional teams selected from China, RG will join them to make a podium presentation at Harvard. The competition encourages young entrepreneurs to identify areas of unmet need and to develop innovative healthcare solutions- a perfect fit with RG’s mission! Read more about the Summit and the competition here: https://www.facebook.com/uschinahealthsummit

Come Join RG’s Internship Program!

This summer, RG brought on 29 interns through our summer fellowship program to help RG undertake a massive rebuilding of RareShare. Our interns have been hard at work adding information on the latest developments to our rare disease communities, as well as building pages for over 200 new rare disease communities. Do you know someone who may be interested in an internship helping rare disease patients? Tell them to email us a resume at contact@raregenomics.org.