Cynthia Ly '16 shares why she cares about rare diseases.
Cynthia Ly ’16 shares why she cares about rare diseases.

The No Disease Left Behind (NDLB) student group’s goal is to help enlighten students and the community with the proper knowledge and education regarding orphan diseases. It was created as part of the Phi Lambda Sigma leadership competition and includes Christine Choi ‘16, Lisa Lam ‘16, Jason Ly ‘16, and Derek Sugiyama ‘16. Recently they hosted a charity dinner to raise awareness for rare diseases and garner donations. The proceeds went to support the Lymphoma Research Foundation.

The first speaker of the evening was Michelle Ha ‘15, third-year student pharmacist. She shared personal experiences of how rare diseases affected her family. For example, Vivian, her younger sister, was diagnosed with Lupus. According to the Lupus Foundation of America, lupus is a chronic, autoimmune disease that affects at least 1.5 million Americans. Ha moved the audience with her real-life stories of her family members and their conditions. She shared images that helped the audience see for themselves how much some of these diseases can affect a person physically. Ha explained how it was a learning experience for her to assist her sister in trying to figure out the right prescription and dosage. Ha also expressed the importance of being patient and having faith. “The emotional impact illnesses can have on the patient and their family isn’t something you learn in school. I had to find the balance between being a family member and a future healthcare professional” said Ha.

The second speaker of the evening was Matt Cheung, PhD, RPh, associate director of managed care medical communications at Genentech and adjunct professor of pharmacy practice at the School. Dr. Cheung opened his speech with a video of Haley Okines, a young woman with Progeria. Progeria is a rare disease that causes individuals to age eight times faster. He also discussed different studies, patient/caregiver education and clinical trial participation along with other important roles pharmacists take in the awareness of rare diseases.

Dr. Joel Wagner shares why it's important to know about rare diseases.
Dr. Joel Wagner shares why it’s important to know about rare diseases.

Jason Ly ‘16 shared his thoughts as to why having a charity dinner was important for their organization. “The dinner was important to our organization because it helped raise awareness for rare diseases that we otherwise would not learn about in our curriculum. Our speakers, Dr. Cheung and Michelle Ha, provided a unique perspective into the rare disease world. Michelle provided us with the perspective of the patient, while Dr. Cheung provided us with the perspective of a healthcare professional. Both perspectives were crucial in helping us educate our attendees.” They did a wonderful job and were able to raise a total of $553.00. The NDLB group plan to continue their road for awareness and hope to accomplish some goals set out in the future.

As Lisa Lam ‘16, one of the founding members shared, they are hoping to “reach a larger population outside of the University of the Pacific campus.” She continues, “NDLB is working to improve our quarterly newsletter that highlights new discoveries and drug developments. One of our goals for the newsletter is for it to be read by individuals outside of this campus, and for it to help make people more aware of a problem that exists. We are making strides one step at a time, and hope to see our work inform a larger scale in the future.” Read the most recent newsletter here.

According to the National Organization for Rare Disorders (NORD) a rare disease is any disease affecting fewer than 200,000 Americans. There are nearly 7,000 such diseases affecting nearly 30 million Americans. To learn more visit http://www.rarediseases.org/.

 


By Sodar Soth '15
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