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.

Who do I tell?

Go slow! This really depends a great deal on the person and their level of comfort. Here is my approach. The first thing I did was to tell only my closest family members and friends. I really need them for support. After that, I did not tell anyone for awhile. I needed time to figure out what this meant to me and my life and did not want to make any decision in case it was a bad one. After a few months, I finally started telling a few people on a need to know basis. Now... I do no
HDAC Editorial Board
admin@hdac.org

A Tribute to Peggy Pappas Chakeres

MY MOTHER She was NOT HD      HD, a BLIP in her life,      A microcosm of time,      That sucked her away from us. Rather, her life: the beach with a little girl deep drags on a True Blue reading teacher - ghetto children chocolate and corn muffins good books and the channel 9 movie late into the night VanGogh in Amsterdam Sinclair Lewis and Emperor Jones Strong Coffee in bed Scotch on the rocks hot baths aft
Stella Chakeres Brockner
scbrockner@aol.com

And Yet He Stays

I'm not the girl he married. I'm not the petite, mischievous, green-eyed devil with a passion for him and for life that had no limit. I'm not the eternal optimist who was sure that with love and a willingness to work hard and hang on through the tough times we could make all our dreams come true together. I'm not the girl who couldn't get enough of holding his hand or hearing him talk. I'm not the girl who just couldn't hug him hard enough to show him how much I loved him. We forged
Vicky Pratt
ima_gimp@hotmail.com

Open Letter to my Friend

This is an open letter to my friend Elaine. Sometimes we fail to consider that forming close friendships online is not only possible but a wonderful gift to our life if we are but willing to give of our self and receive back. When I first mentioned to others around me that I had formed friendships online I was met with the usual questions. How do you really know that the person is who they say they are? What if you get hurt? I agree that those concerns are valid but I have found
Julie Sando
jvabean@hotmail.com

Where can I find out about Juvenile HD?

Recommended Resource The Juvenile HD Handbook: A Guide for Physicians, Neurologists, and other Professionals, written and edited by Martha Nance, M.D., is now available from the HDSA. The handbook can be purchased by going to the HDSA website http://www.hdsa.org and ordering directly through the site, or you can download it here: http://www.hdac.org/caregiving/pdf/juvenilehd.pdf Answers to this question can be found through these links: Juvenile HD Published by HOPES (Huntington's Out
HDAC Editorial Board
admin@hdac.org

A Ministry of One

Portraits of Huntington's is a joyful collection of profiles, essays, and quotes for and about those with Huntington's Disease. Portraits of Huntington's features award winning artist Ruth Hargrave's incredible portraits of eight individuals or family groups who are all in some way touched by this genetic disease. Joy is a choice. Happiness is based on a set of circumstances, and Portraits of Huntington's asks us to choose joy. As with Faces of Huntington's, in each chapter is thematic
Carmen Leal
alohawriter@earthlink.net

Wanting What Once Was

I have lived with H.D. for over twenty years. My Father had it back in the early 40's or 50's. Nobody knew anything about it then. They thought at that time it was alcoholism, as my father was always drunk. Eventually the town committed him to a mental hospital. He later died of jaundice and strangulation. It was years later in the early 80's that my oldest sister was diagnosed with H.D. Only then did we know that it was our father who carried the gene. My oldest sister was placed in vari
Donna

HDSA 2001 Annual Convention

The HDSA Annual Convention is happening this weekend and through the miracles of technology we are going to try to keep you informed about what is happening as soon as it happens. Sue Leck trying on a new couture a'la "Cat in the Hat" Lynn is on site attending meetings and will be sending to me e-mails with notes about the meeting that I'll post immediately to this page. In the evening she will forward photos and meeting summaries that I'll post and provide a link to
Lynn and Steve

Huntington?s Disease Memorial Quilt

Members of the Hunt-Dis on line group for HD families came up with the idea for a Huntington's Disease Memorial Quilt (hereafter called The Quilt) to honor our HD loved ones, friends and family members living or deceased. As you can well imagine, this was a major undertaking. The Quilt is proudly being displayed for the first time at the 2001 Huntington?s Disease Society of America?s (HDSA) National Convention in San Diego June 29 - July 1. Since then the Quilt has been displayed at variou
Hunt-Dis List Members
jemiller@tampabay.rr.com