HDLighthouse Website Crew

The HD Lighthouse web site is a voluntary effort serving the HD Community. It is hoped that this site will assist you in the proactive treatment and care of Huntington's Disease. With the untimely death of Jerry Lampson, primary support for the HDLighthouse moved to the team who also supports the Huntington's Disease Advocacy Center Web site (http://www.hdac.org/). Included below are the cast of the HDLighthouse, both those that are current active contributors and those who's past contributions have made the HDLighthouse what it is today.

Marsha L. Miller, Ph.D -- Editor Marsha has a husband with Huntington’s Disease and a daughter at risk for the disease. Recently her 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.

email Marsha@HDLighthouse.org

Steve Ireland --Web Publisher 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.

email SteveI@HDLighthouse.org

Jim Tretheway -- Editorial Staff 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.

Ann Covalt -- Editorial Staff Ann has been a science and technology writer and editorial consultant for more than 20 years. She has written for many organizations, private, nonprofit, and government, on a range of topics, from education to engineering. Her long-term specialization, however, is biology and health. She is fluent in Spanish. Like all Lighthouse staff, Ann is driven to help find solutions to Huntington’s in any way she can.

Mac Casale, Ph.D. -- Editorial Staff Malcolm (Mac) S. Casale has three family members with Huntington's Disease (HD). Trained as an applied mathematician, he completed a Ph.D. in engineering, specializing in the simulation of large scale engineering designs on the computer. Approximately 10 years ago, he began to wonder whether huntingtin, the protein responsible for Huntington's disease, could be modeled on the computer and whether this would be useful in the search for HD therapeutics. Consequently, he went back to school for a second Ph.D., this time in computational biology. After studying basic biology and computational chemistry, he developed a computer model of a portion of huntingtin and began running molecular dynamic simulations of huntingtin interacting with other huntingtin fragments and other molecules. Determining that computer simulations were far too slow to be of use in designing HD drugs, he went on to study theoretical computer science in an attempt to develop faster models. However, he found that even though computers were well suited to run very large engineering problems, biological systems have inherent complexity that makes them ill-suited to computer investigations. While working on this problem, Mac had a bout with Multiple Sclerosis. Symptoms of this neurodegenerative disease caused him to drop out of the Ph.D. program to concentrate on his other duties. Simultaneously, he was laid off his job. However, Mac was extremely fortunate at this point to land a position in a start-up company (Thuris corporation) founded by world-reknown neuroscientist, Dr. Gary Lynch. This afforded Mac the opportunity of learning hands-on neurobiology using animal (mouse) models. Mac is now working with Dr. Lynch in two capacities, in the lab at the University of California, Irvine (UCI) and at Thuris. In the lab, Mac maintains a colony of more than a hundred HD mice which he and other UCI scientists use for basic HD research. At Thuris, Mac develops a medical device that measures the electrophysiology of HD and works with other Thuris scientists on various compounds owned by Thuris (originally developed to target Alzheimer's) to determine their potential benefit to HD. While never going fast enough, Mac is hopeful that the time is coming when effective therapies will be found for HD and that these will come in time to benefit his loved ones who have the disease.

Kelly B. -- Chat Manager, Contributing Author, Forum Moderator Kelly is a tireless volunteer for the HD cause. In addition to all her work for the HD Lighthouse, she writes a regular series of articles about having Huntington’s Disease for the Huntington’s Disease Advocacy Center. Hi, my name is Kelly. I am in the early stages of HD, my CAG count was 43 and I am 34 years old. I have been in the same relationship for 15 years, married for 11 of those years. I do not have children, unless I count my four furry kids ( 3 dogs and 1 cat). I was a Home Support Attendant for 6 years before giving it up due to HD. I have a wealth of knowledge going to waste. For anyone out there who is caring for their HD family members at home I would be happy to answer/help provide insight into doing things the easy way. Helpful hints and handy tips. 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. I look forward to hearing from HD families. Thank you. Kelly

email Kelly@HDLighthouse.org

Phil Hardt -- Contributing Author This HD warrior is the Huntington's Disease Society of America's man of the year 2001. Phil's wisdom, helpful articles and moving speeches are widely praised by the HD community.

Lavonne Veatch Goodman, M.D. --Past Contributing Author Dr. LaVonne Veatch Goodman is an internal medicine physician at the Everett Clinic in Washington State. Her medical career is now into its 3rd decade. She presently helps care for patients with Huntington's. She has extensive history with medical ethics and patient advocacy. She is former President of the Northwest Chapter of HDSA and remains its supporter. She oversees the medical components of the therapeutic trials for the Huntington's Disease Drug Works, an organization she founded along with her husband Dr. Nathan Goodman.

Nathan Goodman, Ph.D. --Past Contributing Author Dr. Nathan Goodman is presently a senior scientist at The Institute for Systems Biology in Seattle. A PhD computer scientist, he has expertise and extensive history in the building and management of large databases in biologic systems. He, with support from the Hereditary Disease Foundation, is primary author of HDBase, a web site which assembles datasets of interest to HD researchers, including reported drug studies in HD mouse models. He is in charge of web-based data acquisition and storage for the Huntington's Disease Drug Works.

Sharon -- Chatroom/Forum Faciliator Hi my name is Sharon and my son Bobby has JHD, I host a JHD Chatroom on a Tuesday, where everyone is welcome to pop in. My son is 14 now and was diagnosed when he was 8. The first signs we noticed were when he was about 6 years old, the facial tics, rapid loss of weight and then the struggle began, hardly anyone had heard of HD never mind JHD, after nearly 2 years of being passed from Doctor to Doctor, psychologists, you name it we finally got our appointment to see a Neurologist and a Geneticist after about one hour of just talking and basic tests and hearing Bobby's biological dad's history, they decided that they wanted to test Bobby, but first we had to come to an agreement, they would only tell us if Bobby had JHD if his CAG count was 60 or more. That was on September 1999; after about 3 weeks wait on 15 October 1999 we were told the devastating news that yes, Bobby indeed had JHD, and his CAG repeat was 81! That was a long 6 years ago and the changes in Bobby are more noticeable now; his speech and balance are very poor and he is quite rigid. He takes 3 lots of medicine now to help his rigidity, control seizures and help with mood swings. But Bobby still is the most loving child anyone could ever ask for, full of cuddles and I love you's. Through Bobby's illness I stumbled across the HD Lighthouse about 2 years ago, and I have met the most wonderful people, whom I am most honoured to call friends all sharing the same journey as us, some care-givers, others Phd's, and I was delighted when asked to host a JHD chatroom to help people in my situation and to have some serious and light hearted talks. So please feel free to pop in and say hello.

Jan Jones -- Editorial Staff

Annie -- Chatroom/Forum Faciliator

Graham – -- Chatroom/Forum Faciliator

Maggie -- Chatroom/Forum Faciliator

Jerry --HDLighthouse Founder and Former Editor and Publisher Jerry's wife, Peggy, was killed by HD. He was by profession an electrical engineer and enjoyed climbing mountains and surviving other endurance events. Jerry created the HDLighthouse site in his quest to find a treatment for his wife Peggy. Jerry succumbed to cancer but leaves us a tremendous legacy in his vision and his passion for a victory over HD.

Scott -- Past Contributing Author I've always loved science. Growing up I wanted to be an Astronomer, just like my hero Carl Sagan. After a few college courses I thought, "How many jobs are there for Astronomer's"? That's when I wised up and switched to Organic Chemistry. I loved working in the lab every day, I'm currently on disability. I worked in the R&D Lab for a defense contractor, working daily with rocket fuel and new explosives. The accomplishment I'm the most proud of as a chemist, is being awarded a patent for a new rocket fuel for the solid rocket boosters for the space shuttle. My wife's name is Cathy, we have a daughter named Jordan. I love horses, and I flew private planes before my HD started. I have a long family history of HD. I'm a very positive person, willing to help in any way possible.

Lisa -- Past Contributing Author Young, facing and doing life. Lisa addresses her and her peer's concerns.

Gayle --Past HDLighthouse Publicity Director. This contributing author to HDSA chapter newsletters is making sure all know about the HDL. Contact Gayle for your media content.

Past Technical Team

Nick -- Former HDLighthouse Website Producer Nick coerced, bribed many talented web professionals, with whom he worked, between mid 2000 and mid 2002 to help Jerry and he get the new HD Lighthouse website into production. His day-job in the world of Corporate E-Business proved useful. His mother Judy served on the New Zealand HD Association, and is gene positive. It was whilst researching care and treatments that he became long time reader and admirer of the HD Lighthouse.

Steve -- Former Web Site Developer Steve is one of the technology professionals who has donated his personal time to help us with the redevelopment of the HDLighthouse. The site runs Steve's computer programs to update the content menus you find on the homepage and in the sections, turning the editorial teams daily postings into a navigable website. Continued thanks from us all Steve!

Paul -- Former HDLighthouse Graphic Designer Man with unfathomable bucket of patience. Paul has donated his time to the new look.