Rhode Island Rare Disease Day 2013

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On February 28, 2013, World Rare Disease Day, the Rhode Island Rare Disease Community held our “Rare Disease. Abundant Hope” Rare Disease Day Awareness Event at the Crowne Plaza in Warwick RI. Over 150 people came out to honor our three Rare Disease Heroes: Olivia Weltin, Leanna Scaglione, and Emily Hawkins. There was music and dancing, great food, a magician, and a photo booth.

Bay View Academy, in East Providence, RI worked hard to raise awareness and funds to support the rare disease community. Led by the amazing Jo-Ann Sine-Calise, a wonderful group of eight graders came up with the creative “Pair for Rare” campaign. Everyone in the lower school and middle school could participate by dressing as twins for a day. They also raised awareness and funds by passing out flyers and a donation bucket at school basketball games.

In the classroom, Meg Battersby, introduced rare diseases into the curriculum by having the 7th grade students pick a rare disease and do a power point presentation. What a great way to highlight rare diseases. Some of the students showcased their presentations at the Rare Disease Day event. In total, Bay View Academy raised over $600 for the RIRDC! We are so grateful JoAnn Sine Calise, Meg Batttersby, the administration, staff and students who participated!

Olivia Weltin has Hypermelanosis of Ito which has left her with misshapen hands, feet and spine. It has not stopped her from playing Division 1 tennis.

Leanna Scaglione has Neurofibromatosis. Leanna has not let her disease define her and continues to pursue her dream to dance.

Emily Hawkins has Stargardt’s. Her disease has let her legally blind, but Emily achieved her dream of becoming a professional photographer.

Rhode Island Rare Disease Day 2012

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On February 29, 2012, World Rare Disease Day, the Rhode Island Rare Disease Community held our first Rare Disease Day Awareness event. Over 150 people braved a blizzard to attend the event at Alpine Country Club in Warwick, RI. The event included keynote speakers Linda Burke and Rick Guidotti, a magician, music by Tricky Britches, great food and an opportunity for the rare disease community to come together.

Linda Burke is the Executive Director for the The Foundation for Children with aHUS. http://atypicalhus.ning.com/

Rick Guidotti founded Positive Exposure in 1998. As an award winning photographer, Rick worked in NYC, Milan and Paris for a variety of high profile clients including Yves St Laurent, Revlon, L’Oreal, Elle, Harpers Bazaar and GQ. He took photographs of what were considered the world’s most beautiful people, but one day, on a break from a photo shoot, a chance encounter on a Manhattan street changed everything. Rick saw a stunning girl at the bus stop – a girl with pale skin and white hair, a girl with albinism. Upon returning home Rick began a process of discovery – about albinism, about people with genetic differences and about himself.

So Rick turned his world upside down – he stopped working in the fashion industry and created a not-for-profit organization that he named Positive Exposure. It has always been about beauty for Rick. “In fashion I was always frustrated because I was told who I had to photograph. I was always told who was beautiful.” It became clear to him that it was essential for people to understand and see the beauty in our shared humanity, but how? How do you lead people down a different path? How do you get people to see those with differences not as victims, but kids and people first and foremost? The pity has to disappear. The fear has to disappear. Behavior has to change. These kids need to be seen as their parents see them, as their friends see them, as valuable and positive parts of society, as beautiful.

The photos give people the permission to see beauty and interpret beauty in their own right, not to see beauty that is dictated by industry’s ideas of what is acceptable. What started with photographs, has grown into a wide variety of programs created to empower people living with difference – and to educate the world around them.

Tricky Britches rooted in old-time country, with a bluegrass kick and the bounce of a street-corner jugband, Tricky Britches will put some swing in your step from the moment you hear them. Songwriting chalk full of down-home harmonies and dirty licks, their original material harkens back to humble beginnings sawing out mountain tunes on the Portland, Maine sidewalk. Tricky Britches created the original song “A Rare One” to raise awareness and honor those living with a rare disease.