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.

Living with Huntington's Disease Spring Symposium

The Washington Metro Chapter of HDSA is co-sponsoring the Living with Huntington's Disease Spring Symposium. It will be held at: Inova Fairfax Hospital Physician's Conference Center 3300 Gallows Road Falls Church, Virginia When: April 5, 2008 starting at 8:30 AM and finishing up at 4:00 PM. Sessions How a service dog can help HD patients by Shelly Goonan Thinking about thinking with HD by Jim Pollard Breakout Session for Caregivers Only with Jim Pollard Breakout Sesson on the vict
Tim O'Neil

Asking for Help

Life is a struggle for many people. That is the tie that binds all of us together because we are all up against something. We all doubt our sanity at times. But the good news is that it is a fact that only sane people doubt their sanity, only insane people are certain of theirs. Asking for help is difficult for many of us. There is something in asking for help that makes us feel like we are failures for having to do so. We choose to continue to struggle rather than hurt our pride by reaching

Webcast, Patient Power, to discuss <i>&#8220;Huntington&#8217;s Disease: Understanding Illnesses of the mind and body,&#8221;</i>

Wednesday, January 23rd WHAT: Webcast – “Patient Power” with Andrew Schorr at www.patientpower.info. In this special Patient Power program, we will focus on understanding Huntington’s Disease: a degenerative neurological illness of the mind and body. According to the Huntington’s Disease Society of America (www.hdsa.org), HD affects males and females equally and crosses all ethnic and racial boundaries. While there is no cure for Huntington’s disease
Patient Power press release

The FDA Advisory Committee Meeting on TBZ

The news has been reported. The FDA advisory committee has unanimously voted to recommend approval of tetrabenzine (TBZ) for use in treating chorea of Huntington's disease sufferers in the United States. This may be the first example I know of where the HD community made the actual difference in decision making. I will touch on this in a bit. I will also give my impressions of the panel of the FDA committee. I also want to recognize the personal testimonies of those who bravely spoke for us to
Eric Waycott

A Caregiver's Self Talk

I often tell myself that if Tony can live his life with dignity, courage and good humor despite his Huntington’s Disease, then I can be a caregiver with patience, understanding and serenity. I tell myself that I will not stand on the street corner and yell at God that “this is not fair. Tony does not deserve this. I do not deserve this. Our sons do not deserve this.” When a well meaning, but ignorant bystander learns of the death of a child who has lived a life of ment
Maggie

Miracles

It seems only fitting with Christmas only a couple of weeks away that I write this piece on miracles. Miracles come in all shapes and sizes, from the smaller ones that happen unnoticed all around us every day to the most profound ones that have a ripple-effect in our lives. The expected is what keeps us going. The unexpected is what changes our lives. Some people believe that the events that happen in our lives are pre-ordained. Others believe that things happen by chance and coincidence and

HD Testing - my story

When I was 9 years old, my dad was diagnosed with HD. He didn’t know it was in his family because as a young boy he had been sent to live with family members away from his siblings. No one ever told him. He married my mom, had three children and in his early 40’s was diagnosed. My sister (2 years younger than me) was diagnosed at age 23. At age 30, I decided to have a child. I had thought about it many times, the pros and cons, and decided that I didn’t want to, at age
Joan E.

Let's Talk Turkey

I saw Bob in the hallway at our company yesterday. “Bob, we picked the 19th to have our annual Thanksgiving lunch at work before we learned that your wife will be checking into the hospital to have the baby on that day. I am sorry that you will have to miss the lunch this year.” Bob’s expression changed to one of pure pain. “But I want to be at the lunch.” Bob shuffled his feet. “Maybe I can slip away from the hospital. I will just be waiting anyway.&
Maggie

Deciding to Continue Testing for HD

The decision to complete the genetic testing for Huntington’s disease was certainly a difficult and painful decision; however above all, it was a personal decision. Of course, as someone who is extremely close with family and friends, I talked to just about anyone who would listen to me regarding the question of whether or not to be tested. Although the process of “talking it out” was useful in so many ways, both intellectually and emotionally, when it came down to it, no o
Andrea H.

FDA Hearing on Tetrabenazine scheduled for December 6, 2007

We have received confirmation that the FDA Advisory Committee hearing for Tetrabenazine (Peripheral and Central Nervous System Drugs) will take place on December 6, 2007 from 8:00 a.m. – 5:00 p.m. at the Sheraton College Park Hotel in Beltsville Maryland. The Open Public Hearing which provides patients, caregivers, physicians, and advocates an opportunity to address the Advisory Committee will take place from 1:00 – 2:00 p.m. Ideally we would like to pack the Ballroom at the Sher
HDSA
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