About Us

The HD Lighthouse web site is a voluntary effort serving the Huntington's Disease Community. It is hoped that this site will assist you in proactive treatment and care.

Included below is the staff of the Huntington's Disease Lighthouse and the Huntington's Disease Advocacy Center.

 

Marsha L. Miller, Ph.D
-- Managing Editor

Marsha has a former husband with Huntington’s Disease and a daughter at risk for the disease. A few years ago, her late second cousin was also diagnosed in his 80s with late onset HD. She received a bachelor’s in psychology and sociology from the University of Delaware and a Master’s and Ph.D. in sociology from Bryn Mawr College. Formerly an associate professor of sociology, she turned to policy research in 1990 and has been a consultant for nonprofits and state governments regarding effective programs since 1993. With the unexpected diagnosis of her mother-in-law (the first in her husband’s family) in 1997 and her husband’s diagnosis shortly afterwards, she has devoted most of her spare time to HD advocacy.  In 2007 she joined the HDSA as a consultant and maintains the research section of their website.

Steve Ireland
--Site Administrator

Hello, I'm the Web engineer for the Huntington's Disease Advocacy Center as well as the HDlighthouse. I was just starting to learn Web development when HD injected itself in the lives of my family. I immersed myself in the HD cybercommunity several years ago in an effort to learn as much as I could about Huntington's Disease so that I could better understand how to prepare for and manage the impact that HD would have on my family. I still continue to learn a lot from the HD community via the HDAC and HDL forums, HDlighthouse updates, and articles contributed the the HDAC Web site by members of the HD community. I thank everyone for their willingness to share, to help, and to hold each other up.

Jim Tretheway
-- Editorial Staff and Contributing Author

Jim’s wife, Laura, was diagnosed with HD in 2002. Like many families in recent years, Laura’s had no known history of HD in previous generations, it having been misdiagnosed as other illnesses. Jim has a degree in mechanical engineering and an MBA. For many years he evaluated and licensed new medical and other technologies developed at the University of Wisconsin - Madison.

Since Laura’s diagnosis, Jim has become very active in the HD research and family support community. He is a member of the board of the Wisconsin chapter of HDSA and co-facilitates a monthly support group in Madison, Wisconsin. He is on the NIH-led SET-HD panel prioritizing research compounds for potential use in clinical trials. He is a member of the Huntington Project communications group and also serves on the HSG steering committee for an upcoming clinical trial.

Jim likes to tell people how impressed he is with the researchers and clinical trial experts who are working to find a treatment or cure for HD. He sees substantial progress being made and works on the HD Lighthouse to communicate both the optimism for the future and what can be done today to help families dealing with this disease.

Phil Hardt
-- Contributing Author

This HD warrior is a tireless advocate for the HD cause.  He maintains a special section on Navigating the Waters which advises people with HD on how to prepare for the future, apply for Social Security Disability, and deal with HD symptoms.   He also contributes articles about political advocacy and living positively with HD.  Phil received an award from the HDSA in 2001.

Kelly B.
-- Contributing Author

Kelly is a columnist for the Huntington’s Disease Advocacy Center where she writes a regular series of articles about living positively with HD.

Hi, my name is Kelly. I am in the early stages of HD, my CAG count was 43 and I am in my 30s. I enjoy reading, writing, poetry, animals, my computer and helping others where I can. I have reached a plateau in my 6 years journey of HD where I am at peace with my illness. I am very comfortable discussing HD. I am not an expert by any means. I draw my wisdom from personal experience and the experiences of the people I have camped with at Camp Squamish BC for three years running.

My goal is to help as many people as I possibly can. I want to make a difference. There is indeed a kinship that happens to people with HD. I have felt it at camp and here at the HD lighthouse.