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.

Using the Neuropsychological Exam and Other Tools To Help Those Struggling With the "Softer" Symptoms of Huntington's Disease

%BL%Over the last seven years I have had the privilege of assisting hundreds of person’s with Huntington’s Disease (Phds) get the Social Security Disability (SSD) and Long-Term Disability (LTD) benefits they deserved after being initially denied; helping those who were “wrongfully” arrested, accused or crimes, and even kicked out of grade school because of Huntington’s Disease (HD) and Juvenile Huntington’s Disease (JHD); and helping family members understand

Phil Hardt

The HSC National Conference 2008

Why Attend? Join us in Charlottetown at the Delta Prince Edward for an inspiring, energizing and information-packed three days. It promises to be the best HD conference in North America this year! Our Saturday program features not just one keynote address, but an entire day of world-renowned HD speakers. Get the most up-to-date information on drug developments and research discoveries, the latest insights into maximizing quality of life, and a personal, impassioned view of what
Wayne Greenway
mailto:wgreenway@huntingtonsociety.ca

Extra payments to Medicare Advantage plans to total $8.5 billion in 2008

Overpayments will remain significant even after payment reductions in new Medicare legislation are implemented New York, NY, September 5, 2008—Private Medicare Advantage (MA) plans will be paid an average 12.4 percent more per enrollee in 2008 compared to what the same enrollee would have cost in the traditional Medicare fee-for-service program, according to a new report from The Commonwealth Fund. Even if the payment reductions to MA plans mandated by the Medicare Improvements for Pati

Marsha L. Miller, Ph.D.
Marsha@hdlighthouse.org

Stress

%TR% Huntington's families carry their own unique brand of stress. The inner relationships are complex and often heartbreaking on a scale that no one can truly imagine unless that have personally lived with it. There are a lot of sad family histories out there in the HD community. Within an HD family you also have an extra stress factor in worrying about your kids, parents, siblings and extended family members getting the disease. You tend to watch your family members very closely. There wa

The 2008 HDSA Convention

Steve and I attended the HDSA convention, which was held in Pittsburgh, Pennsylvania from June 5-8, 2008. It was one of the more lively conventions with good news on the research front, activities for everyone, good turnout from a growing and active National Youth Alliance, and friendships made and renewed. The convention officially opened on Friday, June 6th, but we were there on Thursday so I could speak to the chapter leaders about the new HDSA website. I have the responsibility for the
Marsha L. Miller, Ph.D.
Marsha@hdlighthouse.org

Patient Power series on Huntington's Disease starting June 2nd

I wanted to make you aware of an upcoming webcast series by the health advocacy program, Patient Power, discussing Huntington’s Disease with medical experts in the field. The shows will air live at noon Central Time Monday, June 2nd through Wednesday, June 4th, at http://www.patientpower.info. Listeners may call in with their questions for the featured doctors live or e-mail questions ahead of time. I know your members would gain valuable information from the show, and I sincerely hope
Steve Ireland
stevei@hdac.org

Living Large

This June makes 4 years that I have been writing this journal/column of my HD journey. It does not seem possible that so much time has passed since I first put pen to paper for Kelly's Korner and set out to try to explain what it is like to live with HD. I started out writing to help other people understand but in the process I ended up gaining a vast knowledge about myself. It was important to me that people understand that HD is not an illness or a sickness but more a matter of learning to

8th Annual Garbage Trail Walk to Massacree HD on May 18th in Stockbridge, MA

Hi! Sunday, May 18th is the date for the 8th Annual Garbage Trail Walk to Massacree HD in Housatonic and Stockbridge in Western Massachusetts. The Walk is a 6.6-mile route of sites made (in)famous in Arlo's classic "Alice's Restaurant Massacree" including the old Stockbridge Town Dump that was "Closed on Thanksgivin'" and the site of the Stockbridge Jail where Officer Obie arrested Arlo. It begins at the Guthrie Center, site of the 1965 "Thanksgivin' Dinner That Couldn't Be Beat" and ends
Jim Pollard
jjpollard@comcast.net

Dine for Huntington's Disease in Elgin Texas on April 25th

Nancy Hutchison’s Chicken Fried Steak Dinner $10.00 per person (adults and children) Friday, April 25, 2008 5:00 pm – 8:00 pm (Dine in or take out) FUMC Elgin Fellowship Hall *extra desserts will be available for purchase “Help us help someone else” Make checks payable to: Huntington’s Disease Society of America This event is being hosted by the FUMC Elgin Kitchen Ministry Team. Our own Deborah Harden was diagnosed in April, 2006 with Huntington&#82
Steve Ireland
stevei@hdac.org

Talking to Children

Talking to children about Huntington's Disease is a very difficult thing to do. Trying to put Huntington's into words that adults can understand is hard enough but when you have to explain it to children it is heartbreaking because the stakes are so much higher. While I do not have children I am the proud Aunt of 17 children. Three nephews who are blood related but do not live near me. Seven who are my best friends children who also live far away from me. And then there are my two best frien