“This old Marine won't abandon his wounded in the trenches." – Jerry Lampson
Although the Lighthouse is research-based, we are strong advocates for getting the best care to people with Huntington’s Disease. Like HD families everywhere, the broader Lighthouse community is involved in fundraising for research, advocating for government funding of research, and participating in observational and clinical trials. This will benefit our families later. Right now though, we want to see our community members with the disease getting good care and having the resources they need for the best quality of life possible.
This requires becoming knowledgeable about research into ‘best practices.’ We will present research into the best medications for symptoms and other aspects of good care here on the Lighthouse. Families can learn about available resources and share information on the Huntington’s Disease Advocacy site and also participate in advocacy efforts to improve resources and care.
This phrase represents two objectives. One is the desire for treatment-focused research. This means that basic research needs to be aimed at finding targets for treatment and that every effort needs to be expended to move the most promising potential treatments along the research pipeline to Phase III clinical trials.
The second objective is for HD families to become proactive. This means becoming knowledgeable about current research and developing a best bet strategy for staying healthy as long as possible. Eating a good diet and becoming physically fit, supplements that have helped the HD mice, and medications in use for related diseases are all possible choices that individuals can make in consultation with their doctors. We believe that families are capable of reviewing the best evidence and making good decisions based on their own personal beliefs about risk vs. benefit. For a good essay about how to do this, read contributing editor Jim Tretheway’s article, A Perspective about Treating Huntington’s Disease Today.
The research is very hopeful these days and we should have treatments verified by Phase III clinical trials within the next couple of years. We want all of our community members with HD to be as healthy as possible to benefit from the treatments which are now moving through the pipeline.