Aug. 15, 2018
Posted by Valaree DonFrancesco
Washington, D.C., August 15, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, and Healthline Media, the second largest health information site with 90 million monthly visitors, have announced the recipients of the 2018 Healthline and NORD Stronger Scholarships. The program’s goal is to to create a stronger, healthier world by assisting and empowering college students who are making a positive impact on rare and/or chronic diseases.
Launched on March 1, 2018 with applications accepted through May 1, 2018, the 2018 Healthline and NORD Stronger Scholarship focuses on the advancement of rare and chronic diseases, either through research, patient advocacy, raising awareness, or community building. The program awards four students with a $5,000 scholarship each. Two scholarships are being awarded to those making an impact on rare diseases, which are defined as those that affect fewer than 200,000 individuals in the U.S. Two additional scholarships are being awarded to those making an impact on chronic diseases, which are defined as health conditions that are of long duration, slow progression, and not passed on from person to person. There are 7,000 rare diseases currently identified. A chronic disease can also be a rare disease. The following are the four 2018 Healthline and NORD Stronger Scholarship recipients, hyperlinked to the interviews Healthline rececently conducted with each in their entirety:
Simran Handa is a 21-year-old senior at Lewis & Clark College working towards her degree in biochemistry and molecular biology. She is also a caregiver for her teenage sister, who lives with Ulcerative Colitis, a chronic inflammatory bowel disease. Simran’s research at Lewis & Clark investigates the biology behind two rare genetic diseases, Hermansky-Pudlak Syndrome and Chediak-Higashi Syndrome.
Daniel Stanley is a 20-year-old junior at the University of Wyoming and is pursuing a double major in biology and environment and natural resources. His younger sister, Emily, had her first seizure when she was 6 months old, but didn’t receive a diagnosis of Dravet Syndrome — a rare, lifelong form of epilepsy — until she was 5. Watching Emily manage her condition has inspired Daniel’s desire to pursue a career in research. He won funding through a competitive IDEA Network Biomedical Research Excellence (INBRE) Fellowship program from the National Institutes of Health (NIH), which has contributed to his ongoing epilepsy research. Daniel is also active with the Dravet Syndrome Foundation, and at a recent conference, he and his older sister participated in a panel made up of siblings of Dravet patients.
When Westminster College senior Matthew Pearl was 4-years-old, he received a diagnosis of Fanconi Anemia, a rare blood disorder that leads to bone marrow failure. At 9, he underwent a bone marrow transplant and the following year, he was invited to speak at a scientific symposium held by the Fanconi Anemia Research Fund. In the years since, Matthew has gone on to speak at various functions and scientific symposiums for the National Marrow Donor Foundation and Fanconi Anemia Research Fund. As he pursues a self-designed major of leadership consulting with an emphasis in non-profit management, Matthew plans to speak to both patients and researchers in Germany in 2019. Matthew has been extensively involved in fundraising, and he and his family have been instrumental in adding more than 100,000 new donors to the National Marrow Donor Program’s Registry.
Upon entering the direct medical program at Rice University, junior Sanika Rane began working towards a bachelor of science degree in kinesiology and a minor in global health technologies. As part of her minor, she and her peers were assigned a semester-long project to design a less expensive alternative to help treat Gastroschisis, a rare congenital birth defect that occurs when a baby’s intestines form outside of the body. While the survival rate of babies born with Gastroschisis in the United States is approximately 90%, the survival rate in developing nations is minimal. The team presented their work at Rice University’s annual George R. Brown Engineering Design Showcase in April 2018, where they were honored with the top award, Excellence in Engineering: 1st Place Design.
Requirements for scholarship eligibility included status as a current junior or senior in pursuit of an undergraduate degree (as of fall 2018), status as a current U.S. resident, a minimum cumulative GPA of 3.0 from their most recent college transcript, and a demonstrated involvement in the advancement of rare and/or chronic disease. The Healthline and NORD Stronger Scholarship Program is administered by International Scholarship and Tuition Services, Inc. (ISTS).
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About the National Organization for Rare Disorders (NORD)®
The National Organization for Rare Disorders (NORD)® is the leading independent advocacy organization representing all patients and families affected by rare diseases. NORD is committed to the identification, treatment and cure of the 7,000 rare diseases that affect 30 million Americans, or 1 in every 10 people. NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. For more than 35 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies and education, advancing medical research, and providing patient and family services for those who need them most. NORD represents more than 270 disease-specific member organizations and their communities and collaborates with many other organizations in specific causes of importance to the rare disease patient community.
As the fastest growing consumer health information site — with 90 million monthly visitors — Healthline’s mission is to be our users’ most trusted ally in their pursuit of health and well-being. Healthline provides socially-inspired, medically-reviewed and data-driven content to help us all live stronger, healthier lives. Healthline’s flagship website http://www.healthline.com takes a whole-person approach to health and wellness information to support the modern health consumer.