For those that aren't aware of this excellent new program for HD families in North Carolina! Note this part - "All NC-CCHD programs are free of charge and funded entirely by charitable donations." Wouldn't it be wonderful to see this type of facility opened up in all major cities in the US!
You can watch the video of this exciting news coverage of this story on the below link to learn how they are pulling together experts from several North Carolina medical facilities to work together to help HD patients and family.
Huntington’s Patients And Families Will Get Help Through Virtual Care Center
http://durhamcounty .mync.com/ site/durhamcount y/news%7CSports% 7CLifestyles/ story/43574/ huntingtons- patients- and-families- will-get- help-through- virtual-care- center
By Julie Henry, NBC17 Oct. 23, 2009
DURHAM, N.C. - There are fewer than 600 diagnosed Huntington's Disease patients in North Carolina, but doctors believe there could be many more who go undiagnosed for years. A new virtual care center promises better access to knowledgeable doctors and to help for families strained, financially and emotionally, by the fatal brain disorder.
Because Huntington's is inherited, most people find out they have it after someone else in their family is diagnosed. Will Brown of Raleigh found out six years ago after his brother was diagnosed. "By process of elimination, we're quite sure it came from my father's side," said Brown. "But he died with no visible symptoms, so it really snuck up on both myself and my brother."
Experts say the onset of symptoms varies from person to person. Brown's brother, who is three years younger, is much more advanced in his disease. Brown, who is running his 33rd Marine Corps Marathon on Sunday, credits his continued good health to being informed about the disease. "As soon as I decided to test, that's when I went looking for information, " said Brown.
Dr. Mary Edmondson sees a number of HD patients in her psychiatric practice and at Duke University Medical Center. As part of the leadership team for the new North Carolina Center for the Care of Huntington's Disease, she is looking forward to having a single point of contact to offer patients and their families. "The center is going to bring together professionals who have specific expertise, including movement disorder specialists, psychiatrists and others who can address the physical, nutritonal and language deficits of Huntington's, " she said.
Edmondson said the number of specialists able to provide care has grown over the 28 years since she got involved, but they are scattered across the state. The center will offer access via the web as well as a telephone advice line to provide referral information. Find out more about the new center at www.nc-cchd. org.
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North Carolina Center for the Care of Huntington's Disease
Website - www.nc-cchd. org.
Thank you for your interest in the NC-CCHD. We are currently in the process of building our website to serve Huntington's patients, their families, and the medical community. Please check back soon! If you would like to make a donation, please click the Donate Now button.
The North Carolina Center for the Care of Huntington's Disease is a non-profit organization dedicated to providing access to medical care and assistance to any individual or family in North Carolina affected by Huntington's Disease.
Access to knowledgeable health care has always been a problem for HD families in North Carolina. NC-CCHD will provide crisis intervention services, streamlined access to expert care and genetic testing services, information about research opportunities, family support and caregiver education. As needs arise, NC-CCHD will create partnerships with other organizations that help HD patients and family members - from specialized HD clinics, to support groups, hospitals, nursing care facilities, public charities, government programs and local community resources.
All NC-CCHD programs are free of charge and funded entirely by charitable donations.. Email us at hdinfo@nc-cchd
=======
FYI - Dr. Mary C. Edmondson, M.D. - Psychiatry
Board Certified - American Board of Internal Medicine and Psychiatry/Neurolog yResidency: Duke UNIV. Medical Ctr. 1998-20021004 Dresser Court Suite 107Raleigh, NC 27609Phone: (919)876-3330 / Fax: (919)876-3325
You can watch the video of this exciting news coverage of this story on the below link to learn how they are pulling together experts from several North Carolina medical facilities to work together to help HD patients and family.
Huntington’s Patients And Families Will Get Help Through Virtual Care Center
http://durhamcounty .mync.com/ site/durhamcount y/news%7CSports% 7CLifestyles/ story/43574/ huntingtons- patients- and-families- will-get- help-through- virtual-care- center
By Julie Henry, NBC17 Oct. 23, 2009
DURHAM, N.C. - There are fewer than 600 diagnosed Huntington's Disease patients in North Carolina, but doctors believe there could be many more who go undiagnosed for years. A new virtual care center promises better access to knowledgeable doctors and to help for families strained, financially and emotionally, by the fatal brain disorder.
Because Huntington's is inherited, most people find out they have it after someone else in their family is diagnosed. Will Brown of Raleigh found out six years ago after his brother was diagnosed. "By process of elimination, we're quite sure it came from my father's side," said Brown. "But he died with no visible symptoms, so it really snuck up on both myself and my brother."
Experts say the onset of symptoms varies from person to person. Brown's brother, who is three years younger, is much more advanced in his disease. Brown, who is running his 33rd Marine Corps Marathon on Sunday, credits his continued good health to being informed about the disease. "As soon as I decided to test, that's when I went looking for information, " said Brown.
Dr. Mary Edmondson sees a number of HD patients in her psychiatric practice and at Duke University Medical Center. As part of the leadership team for the new North Carolina Center for the Care of Huntington's Disease, she is looking forward to having a single point of contact to offer patients and their families. "The center is going to bring together professionals who have specific expertise, including movement disorder specialists, psychiatrists and others who can address the physical, nutritonal and language deficits of Huntington's, " she said.
Edmondson said the number of specialists able to provide care has grown over the 28 years since she got involved, but they are scattered across the state. The center will offer access via the web as well as a telephone advice line to provide referral information. Find out more about the new center at www.nc-cchd. org.
------------ -----
North Carolina Center for the Care of Huntington's Disease
Website - www.nc-cchd. org.
Thank you for your interest in the NC-CCHD. We are currently in the process of building our website to serve Huntington's patients, their families, and the medical community. Please check back soon! If you would like to make a donation, please click the Donate Now button.
The North Carolina Center for the Care of Huntington's Disease is a non-profit organization dedicated to providing access to medical care and assistance to any individual or family in North Carolina affected by Huntington's Disease.
Access to knowledgeable health care has always been a problem for HD families in North Carolina. NC-CCHD will provide crisis intervention services, streamlined access to expert care and genetic testing services, information about research opportunities, family support and caregiver education. As needs arise, NC-CCHD will create partnerships with other organizations that help HD patients and family members - from specialized HD clinics, to support groups, hospitals, nursing care facilities, public charities, government programs and local community resources.
All NC-CCHD programs are free of charge and funded entirely by charitable donations.. Email us at hdinfo@nc-cchd
=======
FYI - Dr. Mary C. Edmondson, M.D. - Psychiatry
Board Certified - American Board of Internal Medicine and Psychiatry/Neurolog yResidency: Duke UNIV. Medical Ctr. 1998-20021004 Dresser Court Suite 107Raleigh, NC 27609Phone: (919)876-3330 / Fax: (919)876-3325
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