Community

Welcome to the community section of HDLF.org. This section is intended to help guide you through the wealth of information available on the Internet for families affected by Huntington disease.

We invite you to try out our active message board at HDLF Forum. It's a public message board so that you can chose to just read what's there or actually participate by helping others or getting answers to your own questions.

Our Sixth Annual Summer Saturday for Families

Housatonic, Massachusetts Saturday, July 31st, 2004 10:00 a.m. ? 4:00 p.m. Sponsored by The Guthrie Center and Laurel Lake Center Overview Families touched by HD will gather again this year (our sixth!) at The Guthrie Center for a day of good speakers, lively discussion, up-to-date information, shared interests and concerns. Where once finding any information about HD was an adventure in itself, now it?s difficult to stay abreast of it all. The day?s schedule covers topics in research, care
Jim Pollard
jjpollard@comcast.net

There is no support group in my area. How do I start one?

Some thoughts. The resources below are excellent. In addition, I have two suggestions for anyone starting a support group are to 1) give people time to meet and talk in separate groups - those at risk, caregivers, people with HD, etc. so they can share common concerns openly. Discussion leaders could receive training as peer facilitators. 2) Treat us with respect. The work that genetic counselors and the other support personnel involved in testing do is very important. However, because
HDAC Editorial Board
admin@hdac.org

Farewell to an HD Warrior ... Jerry Lampson, Lighthouse Keeper

The Huntington?s Disease community lost one of its greatest warriors with the passing of Gerald (Jerry) Lampson on May 31, 2004, after a short battle with cancer. Jerry was the founder and webmaster for the Huntington?s Disease Lighthouse, one of the earliest and most influential HD websites. He believed that hope, as well as exercise, spirituality, and diet were the keys to living positively and proactively with Huntington?s Disease. Most importantly, he believed in knowledge. He spent much
Marsha Miller, Ph.D.
m.miller2001@comcast.net

A Huntington?s Disease Specialty is Opening at Terrace Heights Care Center in March, 2004!

A Huntington?s Disease Specialty is Opening at Terrace Heights Care Center in March, 2004! In the United States, approximately 30,000 people have Huntington?s Disease and another 150,000 are at risk for HD because it is a genetic disease. It is estimated that 790,000 people nationwide - friends, family, employees and neighbors are affected by the disease because someone they know and care about has HD. The chances are that you or someone you know has HD and that is why you are reading this.
Jeanne Rott, M.S.
HDJeanne2004@yahoo.com

Generations of Hope

January 7, 2004 Dear Friends of Generations of Hope, We are working on a camp in Wallowa County, Oregon for children and families who are ?at risk? of genetic hereditary terminal illnesses. Our Organization, Generation?s of Hope is a non-profit agency to assist and advocate for these families and while we work constantly in the field of support and advocacy, our most important goal is a camp for the children who suffer daily, knowing that after they care for their loved ones who are now a
Traci Rorden
tracilrorden@eoni.com

Trudy's Story

Huntington's Disease has been mentioned, or should I say whispered in my family my entire life. My grandfather on my mother's side had it but he died years before I was born. He had four children: my uncle Darrell, Aunt Connie, Uncle Rick and my mom, Trudy. Growing up and seeing Darrell, I always knew he was "different." He was the only grown man in his forties I had ever seen that still lived at home. He was also a chain smoker, loved game shows and would laugh hysterically at anything I s
Miranda Adkins

Cancer?! ? But I?m At-Risk!

My name is Jill. I?m 44 years old and lived with being at risk for 27 years. My grandfather, on my mother?s side, had HD and he passed away in 1964. At that time the doctors said he had Parkinson?s disease. Years later, when my mother started to have the same kind of symptoms as her father they said her father probably had HD and so did she. My mother was in her mid-forties then. She was not the kind of woman who talked about her feelings so we never knew how she felt about getting sick or
Jill Ginsberg

HD Trek Across Texas

Howdy friends (I'm practicing up for the ride across Texas), For the fifth year in a row, there will be a fundraising/awareness bicycle ride for HD. This year, it's called "HD Trek Across Texas" and 800 miles will be covered in 2 1/2 weeks. Charlotte Reicks and I will be riding, albeit Charlotte will do the lion's share of riding, and I will drive the support van and ride some. We will start on Tuesday, May 20 in Texline and end Thursday, June 5 at the Convention Hotel in Houston!
Marie Nemec
rmnemec@JUNO.COM

Letter to Congress

Thank you for writing to me concerning Huntington's Disease. I know just how difficult it is for families who must deal with a loved one's fight against this disease. In early July, I spoke at an event, which dedicated a garden at the S.C. Department of Health to a patient who passed away from Huntington's Disease. I was also honored to make two speeches on the House Floor concerning Huntington's Disease. I have enclosed copies for your review: HUNTINGTON'S DISEASE -- (House of Representat
Margaret Pond