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"Show Your Rare" is theme for Feb. 28 worldwide event 

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At the start of her sophomore year, Rutgers University student Allysa Kemraj found herself becoming increasingly ill.

She was diagnosed in high school with Ehlers-Danlos Syndrome, a rare genetic disease that affects the body’s connective tissue. But that fall her symptoms had worsened.

“One day in October I woke up unable to walk,” said Kemraj, now a senior majoring in cognitive science in the School of Arts and Sciences. “I had spinal stenosis caused by three ruptured discs, and in the months following, I’d be hospitalized nearly biweekly.”

The health crisis spurred her to organize the first-ever Rare Disease Day event at Rutgers. Early into the spring semester, she prepared a presentation about her illness and booked space at Busch Engineering, Science and Technology Hall. She figured a smattering of her friends would attend.

“I needed an outlet to talk about it,” she said.

But the event drew a modest audience that included faculty, staff, and students, some of whom she did not even know. There was applause, and follow-up questions.

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“When I saw the turnout, I was floored,” she said. “It showed me that people from all facets of Rutgers cared, and wanted to learn more about rare diseases.”

Since then, Kemraj has made Rare Disease Day—which is observed worldwide on the last day of February—an annual tradition at Rutgers. Last year she led a discussion about research. This year the February 28 event will feature a guest speaker, the New York City-based photographer, Karen Haberberg, whose recent book, An Ordinary Day: Kids with Rare Genetic Conditions, chronicles the everyday lives of children with rare diseases.

“This book really touched me,” Kemraj said. “She was able to portray these children in a way that gives them dignity while capturing their day-to-day experience and the experience of their parents.”

Kemraj, who wants to pursue an MD/PhD and become a physician, said the book affirmed her life’s mission. “I read it and thought ‘this is what I want to do for rest of my life,’’’ she says. “These are the kinds of patients I want to work with.”

Rare Disease Day was first launched in Europe in 2008 by an alliance of health organizations with the goal of educating the public as well as elected officials, policy makers, researchers, and industry. The United States joined in 2009, and in 2013 President Barack Obama sent a letter proclaiming his support of the day.

In the U.S., a disease or disorder is defined as rare when it affects fewer than 200,000 people. One in 10 people in the United States are living with a rare disease, a total of 30 million people

Kemraj says Rare Disease Day helps patients feel affirmed, and builds awareness of the importance of scientific research. But she also emphasized that people who previously knew nothing about rare diseases are left inspired. After the 2017 event, she received  emails from faculty and students, including a pharmacy major who wanted to do his project on rare diseases.

 “We know that in one in 10 people are living with a rare disease,” said Kemraj, who is fundraising chair for the National Society of Collegiate Scholars, which is presenting the event.“These are people in our communities and in our neighborhoods. Our lives become richer and more meaningful when we know them and support them.”

The Rare Disease Day event begins at 8:30 pm, February 28 at the Livingston Student Center Room 201a. This year's Rare Disease Day theme is #ShowYourRare! For more information, click here.




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Chelsie Riche, one of 36 U.S. scholars chosen, pursues her quest for equal access to education

By Dory Devlin | February 13, 2017

ChelsieRich inlineWhen Rutgers University senior Chelsie Riche applied for graduate fellowships, the Gates Cambridge Scholarship stood out because of the program’s commitment to scholars working for the greater good.

“The scholarship resonates with what I’ve been doing at Rutgers,” says Riche, 21, who has focused her research and activism on providing access to education for marginalized communities. Riche is one of 36 students nationwide awarded the prestigious scholarship to pursue graduate studies at the University of Cambridge in the United Kingdom.

Majoring in Africana studies and history with a minor in women’s gender studies in the Rutgers University-New Brunswick School of Arts and Sciences, Riche also is drawn to Cambridge because of its renowned Centre for African Studies, established in 1965. “I wanted to be a part of that,” Riche says, noting she will pursue a master’s degree in African studies and research on the Fees Must Fall student-led protest movement against increases in fees at South African universities.

“I’ll be looking at how the student revolutionaries who are leading the Fees Must Fall movement are using social media as platforms to motivate students to get more involved,” says Riche, also a member of Douglass Residential College..

Established in 2000, the scholarships funded by the Bill and Melinda Gates Foundation cover all fees and living expenses for a student’s full-time master’s or doctoral studies at Cambridge, one of the oldest and most esteemed universities in the world.

Counting Riche’s award, Rutgers claims nine Gates Cambridge scholars in the last 10 years, says Arthur Casciato, director of the Office of Distinguished Fellowships for Rutgers University-New Brunswick. “Riche is one of the most genuine fellowship candidates I’ve ever met – genuine in all of her commitments: to her studies at Cambridge, to the research she wants to do and to her efforts to make the world the best place it can be.”

Riche is deeply passionate about all children having access to quality education. Growing up in Haiti, she was one of the few children in her family able to go to school, so she would teach her cousins who did not attend what she learned in the classroom. After arriving in the United States in 2006, she excelled in her school work in her hometown, Irvington. But Riche struggled during her first year at Rutgers as a first-generation student trying to navigate college life and a rigorous academic schedule. She told Rutgers Today the experience made her realize that the same economic barriers to education she thought she had left behind in Haiti exist in the U.S.

Rather than discourage Riche, the epiphany led her to get more involved helping other students. She helped plan the first Student of Color Conference. She served as president of the Galvanizing and Organizing Youth Activism (GOYA) organization, where she planned 5k walks to promote literacy and collected school supplies for local and global communities. In the spring of 2016, she traveled to Cape Town, South Africa, to participate in a service learning program at Ned Doman High School, collaborating with the University of Cape Town to facilitate college readiness workshops for more than 90 learners. The following summer she interned for Sen. Cory Booker (D-N.J.), working with his senior team on education policy and on civil rights and social justice issues.

Riche says after the one-year fellowship at Cambridge she aims to obtain a PhD/JD in education and law “to hopefully influence education reform policy.”




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