February 15th, 2018
Interpreting This Week’s News: Fighting Cancer…With HD?
Research studies in recent years have shown that people with Huntington’s Disease and related hereditary CAG repeat disorders have lower rates of cancer than the general population. We’re not sure why that’s the case, but some scientists suspected that the HD gene and its toxic RNA message might actually have some cancer-fighting power. In a recent publication, a team at Northwestern University reported that they attacked cancer cells using bits of the repeating CAG section of huntingtin. This successfully slowed the growth of tumor cells in dishes and in mice. This is a very cool idea, but be aware that recent press releases have upped the hype: we’re not about to start giving people HD to cure their cancer. Treating one disease through the gene that causes another is a tricky business requiring a LOT more research. Nevertheless, it’s really exciting when research into Huntington’s Disease provides new insights for a broader realm of medicine.
Participate in a Research Survey
HDSA supports young scientists and medical professionals who have designed research surveys about HD by sharing links to their university-approved studies on our website. We’re featuring two studies this week:
Genetic testing and Social Media
Kaitlyn Riley, a Genetic Counseling student at Virginia Commonwealth University, is studying whether people use social media to share their genetic test results for different conditions (including HD). She wishes to learn whether people may benefit from social media use when discussing test results. This research is important for organizations like HDSA because it can inform us about how best to support individuals and families as they navigate genetic testing in the age of the internet.
Medical Coverage for People with Disabilities
The NIDILRR-funded Collaborative on Health Reform and Independent Living (CHRIL) is looking for adults with disabilities to complete an online survey about getting and using health insurance and health care services. The goal is to understand how the Affordable Care Act (ACA) may be affecting your life. Whether you have private insurance, insurance from an employer, Medicaid, Medicare, or no insurance, your responses will help the HD community to have a voice in the national dialogue about medical coverage.
February 8th, 2018
First HD-COPE Meeting
The first meeting of the Huntington’s Disease Coalition for Patient Engagement (HD-COPE) took place in London this week. HD-COPE unites organizations serving HD families in Europe, Canada, and the USA to help give patients a direct voice in clinical research by facilitating communication between the HD community and pharmaceutical companies working on drugs for HD. Family input is especially important as potential huntingtin-lowering treatments enter clinical trials. To learn more about HD-COPE, read HDSA’s September press release.
Interpreting This Week’s News
Recent press suggests that consuming sugary, caffeinated sodas could lead to an earlier onset of HD. But don’t get too alarmed about your pop consumption – even the researchers who performed the study are cautious about making this interpretation. They looked at many lifestyle factors (like smoking, alcohol, soda, and morning coffee) in around 250 at-risk individuals over a period of about 4 years. For the 36 people who developed HD symptoms during the study, statistics suggest that caffeinated soda might have been a potential culprit – but not coffee or tea. The researchers conclude that development of symptoms “was generally not affected by the lifestyle factors that we investigated,” and that further study is necessary before recommending dietary changes to people at risk.
Another recent news article and an audio segment on NPR’s Science Friday suggest that we need to re-evaluate huntingtin lowering because of new insights about how the protein affects the developing fetus. However, the media’s interpretation of the research has been puzzling. A team at Rockefeller University in New York created some new tools to study the role of huntingtin protein in an embryo growing in a dish. They found that huntingtin could be doing harm in brain cells much earlier than we think, but the news confused their novel techniques with a clinical approach. Check out this detailed explanation of their findings from HDBuzz.