RARE Scholars Program Supports College Students Living with Genetic Conditions
September 25, 2024
When Jiayi Yan was tasked with selecting a research emphasis track as part of his Doctor of Pharmacy program at the University of Minnesota, he landed on a topic that was very personal.
The third-year grad student decided to conduct an extensive study on the lived experiences of adults with achondroplasia, the most common form of dwarfism. Jiayi, who expects to graduate with a Doctor of Pharmacy degree in 2026, presented his findings at a Rare Disease Day event organized by the school’s Center for Orphan Drug Research earlier this year.
“Doing the research, and then putting myself out there to share the progress of the original study, helps raise awareness about our community and some of the challenges we may face,” says Jiayi, who was born with achondroplasia. “My goal is to let the audience know that there’s something we need to be paying attention to.”
Jiayi is one of five students to receive support from 博彩平台网址大全’s RARE Scholars program for the 2024-25 academic year. The program was created to offer financial assistance to U.S. college students with rare genetic conditions – now including achondroplasia, Batten disease, hemophilia A, mucopolysaccharidosis (MPS) and phenylketonuria (PKU). Since 2018, the program has given more than $125,000 to 26 students like Jiayi who have shown outstanding leadership and participation in school and community activities.
“Every year the RARE Scholars award recipients are impressive, and this year’s cohort is truly exceptional,” says Marni Kottle, Executive Vice President, Chief Corporate Affairs Officer. “We’re proud to play a small role in helping these individuals through college and graduate school, as they pursue their passions and begin their careers.”
Jiayi credits his professors and some older students for making him feel more at home in academia, enabling him to excel in his academic pursuits. In addition to becoming a pharmacist, he’s committed to making the world kinder and more accepting. He believes conducting and sharing his research will help him deliver on that commitment.
“I just really want to dedicate myself to this field,” Jiayi says. “I want to advocate, share my voice and share my experience to make myself heard, and make sure other people are heard as well.”
Allison Lowrie: Beginning Her Journey at Texas A&M
Scholarship recipient Allison Lowrie began her college journey last month when she started her freshman year at Texas A&M University.
Allison, who is living with PKU, is studying animal science and living off campus with her puppy. Managing PKU presents unique challenges for a college student living away from home for the first time. The genetic metabolic condition is characterized by an enzyme deficiency that inhibits the body’s ability to break down an amino acid called phenylalanine found in all foods with protein. People living with PKU limit their protein intake and can face cognitive issues related to the condition.
“I was a little nervous about the transition, but it’s a great community, and I’ve already met a lot of people,” says Allison, “One of the things that’s kept me active is taking my dog for walks. We walk around, and I’m meeting so many new people.”
Despite her complicated relationship with protein, Allison plans to pursue a career in meat sciences.
“What sparked the interest was taking part in Future Farmers of America through high school,” she says. “I met some great people there who were in the industry doing inspection or lab research, and I got to do a lot of behind-the-scenes things, dive deep into the actual career and do some internships.”
Allyson Chan: Starting Pursuit of Career in Legal Field at Occidental
Meanwhile, Allyson Chan is starting her first year at Occidental College in Los Angeles.
“Geographically, I think the area has a lot to offer because LA is so rich in culture, and it’s very diverse,” says Allyson, who is living with MPS IVA, a rare, progressive condition that can impact organs, bones and other parts of the body.
Allyson plans to study sociology and politics. While living with MPS IVA includes some significant challenges, Allyson says she is looking forward to finding new ways to push herself academically, including by reading more, improving her writing skills and homing in on her focus for graduate school.
“I really hope that in five years I’m in law school, on my way to becoming an attorney,” she says. “I’ve thought about focusing on intellectual property, or possibly family law.”
Brian DuVal: Working Toward Graduate Degree in Public Health at Vanderbilt
Brian DuVal is pursuing a Master of Public Health degree from Vanderbilt University and expects to complete his studies in 2026.
Brian says living with hemophilia A, an inheritable bleeding disorder that can inhibit the body’s ability to clot and lead to uncontrolled bleeding and irreversible joint damage, has influenced his academic path and career ambitions. He hopes to put his degree to use by amplifying voices in the bleeding disorder community and contributing to policy that improves access to medicines.
“I know that the hemophilia community needs leaders,” says Brian, who previously worked at the Hemophilia Federation of America as an Advocacy and Outreach Coordinator. “My goal is to have a role where I have influence over things that directly impact my health and the health of people I know. I feel a great deal of personal responsibility.”
Apart from his studies, Brian says he is looking forward to exploring Nashville’s iconic music scene.
“I’ve been able to go to a couple concerts so far and I’m really looking forward to branching out from the main tourist area on Broadway to explore the places locals go for music,” he says.
Will McClintock: Studying Computer Science at Washington While Giving Back to PKU Community
Will McClintock, who received a RARE Scholars award for a second consecutive second year, is a sophomore at the University of Washington. The former high school swimmer has added another water sport to his resume, joining the water polo club, and was recently accepted into the school’s computer science program. He’s also the recruiting chair of his fraternity.
While still refining his goals for the future, Will pictures himself working in computer science, potentially in big data, and for now is enjoying campus life.
“The campus is gorgeous,” he says. “Being a two-hour drive away from home is also perfect for this stage in my life.”
In addition to his busy college schedule, Will makes time to help support children living with PKU and their families.
“This summer, I started volunteering at the Institute on Human Development and Disability at the University of Washington,” says Will, who was an IHDD client as a child. “The people there have known me my entire life. They took my blood samples when I was 2 years old, and I’ve been working with the IHDD to get lancet donations for blood draws for other children and families with PKU.”
Learn more about the RARE Scholars program, including how to apply. The application window for the 2025-26 academic year will open February 28, 2025.