There are a lot of HD families in North Carolina, but not much in the way of support. I'm glad to see a chance for some attention for this area.by ellenc - Huntington's Disease Support Center
I guess I'm asking what steps you're taking to try to find a cure for HD? You're all about getting on the message boards about your experiences and how others don't understand what you're going through. Are you willing or able to step up to the plate?by ellenc - Huntington's Disease Support Center
Barb, You've stated your unwillingness to participate in clinical trials, due to your fear of new medications interfering with your current meds. Anyone can understand your thoughts on this. To me, this video has a different viewpoint, that is to encourage people who are at risk, or who have tested positive, to join the global HD community to enter HD clinical studies. I see it as a move iby ellenc - Huntington's Disease Support Center
My research hasn't led me to Switzerland yet. I have found a couple of HD families connected with Switzerland County, Indiana. A search on Wikipedia indicates that it was so named because of the large numbers of Swiss immigrants.by ellenc - Huntington's Disease Support Center
CAdreamer, There are many of us trying to trace HD families through genealogy. It is difficult, as HD was/is often mis- or un- diagnosed, making it hard to determine exactly which family member suffered from HD. Some family members died at an early age from other causes which may have been related to HD. Or not. Rootsweb has an HD mailing list:by ellenc - Huntington's Disease Support Center
by ellenc - Huntington's Disease Support Center
I try to educate people about Huntington's Disease. My friend's husband died of HD; her oldest child is in the last stages at age 43. My friend has 4 other children. One tested negative, the others have not tested. For myself, awareness of HD led to my payroll deduction of $10 every two weeks to HDSA, thru the United Way. That's what I'm able to do. I have another coworker, age 23 from Shelby ellenc - Huntington's Disease Support Center
My name is ellenc from northeastern North Carolina. I don't have HD in my family, to my knowledge. My coworker's husband died of HD, as did his identical twin and their older brother. My interest is the histories and genealogies of the families affected by this disease.by ellenc - Huntington's Disease Support Center
Maggies's Hothouse picsby ellenc - Huntington's Disease Support Center
A combination of shyness, apathy and fear. Well spoken, Appleseed. I don't know that someone who is researching the genealogy of an HD family can ever hope to root out its source. There sometimes seems to be so much pure misery in each family affected that it becomes perfectly understandable, even rational, for the next generation to strike out on its own, leaving parents, family, and unhapby ellenc - Huntington's Disease Support Center
I read something this morning that was kind of interesting. I don't remember the website, but the commentator indicated that maybe HD has only become genealogically important in the last 200-500 years because that's how far we can generally can trace our families back. Before that, the average age at death was 30's-40's. HD probably existed, but it was not important as a cause of death. The artiby ellenc - Huntington's Disease Support Center
Barb, thanks for posting that link, it is very cool. And it is just the kind of thing that we genealogists can chew over and attempt to draw some conclusions. I'm grateful.by ellenc - Huntington's Disease Support Center
Barb, Fred's not nuts. Would you have had issues with your parents trying to discover your status? At age 6? Or at age 12? You wouldn't have known if they did. Fred's child doesn't know either. But now Fred understands what he may have to deal with. And he can direct his child to possible positive steps to prevent early onset. And that is a new take on a positive result. I think that Frby ellenc - Huntington's Disease Support Center
Big Sister, I would like to have any information that you feel comfortable sharing. My email address is in my profile. However, you don't have to share anything. I will gladly email you the information I've gathered on your family, as well as the info I've gathered on the Bedford VA family I'm researching. I compared the family trees of Ethel Abbott and your great-grandfather John R. Miller, andby ellenc - Huntington's Disease Support Center
I'm not sure about all the Miller connections, but based on the info that big sister posted about her grandmother, I was able to tie her family in to a family I'm already researching, the Prestons of Bedford County, VA and Lawrence County, KY. I use the Family Tree Maker software; when I pull up a kinship report on Margie Miller, I find 4 connections to other HD victims, outside of her immediby ellenc - Huntington's Disease Support Center
There are some Hill's who descend from some of Huddleston's Noe's who had/have HD. The Hill connection is kind of recent, though, marrying into the Noe family in the 1920's, as far as I can tell. I haven't come across any name like Bourland or Borland, but will pay attention to those surnames, or any like-sounding name. I have noted a few McElwain's who may be connected to HD families, butby ellenc - Huntington's Disease Support Center
Appleseed, did the Kentuckians you listed have HD?by ellenc - Huntington's Disease Support Center
Huddleston, I supposed that the Lee Noe's were the same as the Harlan Noe's. I have found Marcum's and Jones's in West Virginia with HD. I discovered a Noe-Marcum marriage in Lee County and a Noe-Jones marriage in Virginia thru Rootsweb and GenCircles. Kind of skimpy info, but many HD families are difficult to trace. It's hard to piece together this puzzle. I have a Mary Skidmore, b. abt 1904 whoby ellenc - Huntington's Disease Support Center
I've been researching HD genealogy in Southwest Virginia, and came upon something interesting: the 1795 Lee County, Virginia tax list (on the border with present day Harlan County) has several family names which later persons with the same surname had HD. The surnames are Noe, Shepherd, Litteral, Poteet, Rice, Skidmore, Jones, Marcum, and McGuire. I have a question: are we dealing with one HD faby ellenc - Huntington's Disease Support Center
A history or genealogy thing would be interesting to me. There are many folks trying to link some of these HD families together. Plenty of people went to Texas in the 1850's to 1890's. There are lots of folks in Texas with HD. Where did they all come from?by ellenc - Huntington's Disease Support Center
Mark, I offer my sincere sympathies on the loss of your dear friend. Here is the address for the Hereditary Disease Foundation, dedicated to Huntington's research. Hereditary Disease Foundation 3960 Broadway, 6th floor New York, NY 10032by ellenc - Huntington's Disease Support Center