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Global Genes Announces Winners of the David R. Cox Prize for Rare Compassion

October 21, 2015

Student from Baylor College of Medicine Wins Top Honors

ALISO VIEJO, Calif. — October 8, 2015 — Global GenesTM is proud to partner with Students Advocates for Neglected Diseases (STAND) to present the second David R. Cox Prize for Rare Compassion, an essay program that connects medical students with the rare patient community. More than 70 student submissions were narrowed down to three prizewinners, who were recognized at the 4th Annual RARE Patient Advocacy Summit in Huntington Beach, California on Friday, September 25.

Ang Xu, a 2nd year medical student at Baylor College of Medicine in Houston, Texas, earned the grand prize. Xu’s winning essay, The Complexities of Medicine Lie Outside Textbooks and Examination Rooms, explored Congenital Central Hypoventilation Syndrome. “The main reason I learned so much was because of the family’s willingness to share their entire story with me,” stated Xu. His medical interests lie in healthcare policy and quality improvement and patient safety. Xu plans to stay in touch with his matched family.

In preparation for the essay submission, students in their first or second year of medical school are required to forge a relationship with a patient, family, or advocate affected by a rare or neglected disease in order to write about the experience. Based on this interaction, students shared their reflections, conveying the significance of the disease’s effect on the patient, student or society, and offered examples of personal or professional growth through a 2,500-word essay.

This year’s program saw more than 1,500 families request to be matched with a medical student, over 65 diseases represented in essays, and participation from students attending 55 medical schools in the U.S. and Canada.

“The Cox Prize has grown into a fantastic partnership between the medical students of STAND and the network of rare patient advocates with Global Genes,” commented Colton Margus, STAND Founder and student at New York Medical College in Valhalla, NY. “Thanks to our combined effort, the program is challenging medical students to explore ways to improve compassion for and understanding of the obstacles that rare patients and families face everyday. This is a goal that is very close to

me professionally, as I pursue my own medical degree, but also personally, as a sibling to two great guys with ataxia telangiectasia,” he added.

A panel comprising Global Genes Medical and Scientific Advisory Board members and patient advocacy leaders evaluated the submissions on extent of the contact, compassion, novelty, and insight to determine the winners. The three winning submissions received cash prizes of $1,500 for first place, $1,000 for second place and $500 for third place.

“Global Genes would like to thank Foundation Alliance partners, STAND and rare disease patients and families for an overwhelming response to the Cox Prize,” commented Nicole Boice, CEO of Global Genes. “Through programs like this, we are connecting the next generation of physicians and leaders with the world of rare. We are encouraging compassion among doctors for the challenges families of rare disease face. It’s truly incredible.”

Global Genes would like to congratulate the following 2015 David R. Cox Prize honorees:

1st Place

The Complexities of Medicine Lie Outside Textbooks and Examination Rooms Congenital Central Hypoventilation Syndrome
Ang “Tony” Xu
Baylor College of Medicine, Houston, Texas

2nd Place

What Mason Taught Me: The Sad Truth About Rare Diseases Pediatric Hepatocellular Carcinoma/Pediatric Cancer Margaret Cupit
Mayo Medical School, Rochester, Minnesota

3rd Place

The Strength Within
Cystic Fibrosis
Lauren Meiss
University of California San Francisco, San Francisco, California

Honorable Mention

Let Me Not Die While I Am Still Living: Strength in the Face of Chronic Illness Lymphangiectasia
Alexandra Giantini Larsen
Harvard Medical School, Cambridge, Massachusetts

Honorable Mention

The Power of a Name
PURA Syndrome
Rachel D’Amico
The Ohio State University College of Medicine, Columbus, Ohio

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About The Prize

David R. Cox, MD, PhD was an extraordinary physician scientist, becoming Professor of Genetics and Pediatrics at UCSF and later Stanford, as well as shepherding development of genomic medicine at Pfizer. In addition to his participation in the Human Genome Project and service on numerous national advisory boards, Dr. Cox showed uncommon compassion in his involvement with advocates for rare diseases. He was especially helpful to the A-T Children’s Project, an organization aiming to cure a rare

and debilitating genetic disorder, ataxia telangiectasia (A-T). For more information, please visit www.globalgenes.org/coxprize.

About Stand

Student Advocates for Neglected Diseases (STAND) is a student organization inspiring future clinicians to care about disease communities often neglected by the healthcare system. Engaging medical schools across the country, STAND connects students with neglected patient groups. Colton Margus, a medical student whose two brothers have a rare neurodegenerative disease, started STAND. For more information on STAND or to get involved, email [email protected].

About Global Genes – Allies in Rare Disease

Global Genes is a leading global rare disease patient advocacy organization. The group’s mission is to eliminate the challenges of rare disease, by providing patients with educational tools, building awareness, providing critical connections and support to people and resources, and through investment in technologies that will positively impact affected patients and families. Recognized worldwide by the Blue Denim Genes RibbonTM, Global Genes unites experts, advocates and patients of all ages to stand together in hope for treatments and cures for the estimated 7,000 rare and genetic diseases that impact approximately 30 million Americans and over 350 million people worldwide.

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