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Patients With Genetic Disorders Find Answers at New Library


 














Brad Schaefer, M.D., chief of the UAMS Division of Genetics, left, and Kye Masino shake hands after unveiling a sign designating the Kye Masino Family Resource Library.












Kye Masino, right, hands a book to Matt Toland and his son Leighton Toland before dedicating the library. 

April 8, 2013 | A library of resource materials for patients with genetic disorders and their families was dedicated today at the University of Arkansas for Medical Sciences (UAMS) Medical Genetics Clinic in honor of donor Kye Masino, a Hot Springs eighth-grader.

The Kye Masino Family Resource Library was stocked with materials bought with a $30,000 donation from Kye-YAC International, a charity founded by Kye that gives to programs benefiting young people.

Located in Freeway Medical Tower with the Medical Genetics Clinic, the library provides books and materials to help patients and their families better understand genetic disorders and how to cope with them.

Among those attending the dedication were Kye; his parents Doug Martin and Melanie Masino; Dorothy Morris of Hot Springs, Bob Shoptaw, chairman of the UAMS College of Medicine Board of Visitors; Bradley Schaefer, M.D., chief of the UAMS Division of Genetics; and Kent McKelvey, M.D., head of the division’s Adult Genetics Section.

“After spending an incredibly eye-opening day last summer with Dr. Schaefer, I realized how our mission and his work with cutting-edge medicine in genetics and families could match together in so many ways,” Kye said. “That’s why we’re here today, to open this resource library to educate families about genetic disorders.”

The clinic offers evaluation, testing, genetic counseling and ongoing patient care for adults and adolescents, including those with Down syndrome.

“We’re incredibly grateful,” said Schaefer. “A gift like this allows us to put these resources into the hands of people who might not have had them available.”

Schaefer said Kye, who has an interest in genetics, decided to help the library after the two were introduced by mutual friend Dorothy Morris of Hot Springs. They discussed several areas in which Kye-YAC might help the Medical Genetics Clinic. The need for a family library was the one that seemed to appeal most to Kye, Schaefer said. After all, it was family that led to the beginning of Kye-YAC International.

Kye’s grandmother, Nancy Masino, died suddenly during the Christmas season in 2007. As a tribute to her, Kye’s family created an endowment through the Hot Springs Area Community Foundation, which later developed into Kye-YAC International.

Kye leads the all-youth board, the Youth Advisory Council (YAC), which researches and chooses children’s charities to support. Kye-YAC’s goal is to achieve “a future in which kids in Arkansas are joining to create a better tomorrow.” Through fundraising events and donations, the nonprofit organization raised more than $100,000 in charitable giving for Arkansas youth.

McKelvey said the library has been outfitted with furniture and shelving, books, resource materials and a computer terminal for families to use. Typically, money from grants and donations isn’t available to pay for patient materials.

“I liked the idea of the library because it’s something that people of all ages can use, the sister whose brother is having some troubles that she doesn’t have and also the parents,” Kye said after the dedication.

The library has materials families can take with them to help educate other loved ones about medical genetics.

“The library is there to help them share with other family members,” Schaefer said. “For instance, we talk to parents about their child, and then the grandparents ask what we said. These are the sort of materials they can show and lend to other families members, so they are informed as well.”

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