Last quarter, two key members of the HOPES team were able to incorporate their HD knowledge and interests into their respective Stanford abroad experiences. Student co-leader for HOPES, Kristen Powers, spent the winter quarter in Cape Town, South Africa through Stanford’s Bing Overseas Studies Program while student researcher Lina Vadlamani was in Washington DC through the Stanford in Washington (SIW) program. Both Kristen and Lina were able to draw upon their unique skill sets and locations in order to continue their involvement in the global HD community. While in Cape Town, Kristen put on a screening of Twitch (a documentary film about her decision to get genetically tested for HD), attended HD support groups, and spoke at an event for individuals affected by HD in the Cape Flats, a region of Cape Town that is often underserved by traditional city services.
While immersed in Washington DC politics, Lina took the opportunity to lobby for the HD Parity Act in Congress by working with the Huntington’s Disease Society of America (HDSA) and Strategic Health Care to urge representatives to cosponsor the bill. This experience not only allowed Lina to become more familiar with the advocacy process, but she cites her experiences with HOPES as inspiration for her involvement in this policy-making process.
In their words...
"My experience reaffirmed the importance of translating pure science and medical information into a format easily understood by policymakers and other interested people, so that it is not lost in academia but actually acted upon. I would love to use HOPES to increase awareness of ways that people can be involved with advocacy efforts." -Lina Vadlamani
"This experience in Cape Town made me realize how useful information on the HOPES website is to people all over the world. That was extremely validating. It pushes me to provide even more assistance and resources to our followers."
- Kristen Powers
The Stanford HD Clinic, run by neurologists Veronica E. Santini, MD and Sharon Sha, MD, was recently designated by the HDSA as a Center of Excellence.
ABOUT HOPES HOPES is a team of undergraduate students at Stanford University who, together with faculty advisors, are dedicated to making scientific information about Huntington's disease (HD) more readily accessible to the public. Our goal is to survey the rapidly growing scientific literature on HD and present this information in a web source. We seek to provide information about causes, symptoms, and treatment of HD that reflects current scientific understanding of HD. To date, HOPES resources have reached out to families in over 47 countries.
Have you seen the HOPES whiteboard video on genetic testing?