Huntington's Disease Support Information

North Carolina

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Other Resources
Click on map for yellow pages
Click for detailed North Carolina Flag 
HDSA Chapter
President:      Pam Lowe
Phone:           (704)525-2087
Address:        PO Box 681 
                        Cary, NC 27512
         None listed
Vice President :    Lee Epps
Family Services:  Joyce Owens
Secretary :            Cathy Cabig
Treasurer:             Terry Gill
N.C. Phone Contact :
Betty Waters

Peer Led Groups: Waynesville, Asheville,
Eastern Tennessee, Johnson City, Charlotte
and Winston Salem
Genetic Testing
University of North Carolina
Department of Pediatrics
Medical Research Building A
Campus Box 7487
Chapel Hill, NC 27599
Contact:   Karen Potter MS CGC
Phone:      919-966-4202
Fax:           919-966-3025
HD Experienced
Wake Forest University 
Bowman Gray School of Medicine 
Department of Neurology
Medical Center Boulevard 
300 S Hawthorne Rd
Winston-Salem, NC  27157-1078 
Phone:    (336)-716-4101
Physician : Dr. Francis Walker, MD
Head of Research in N.C. for HD
Nursing Homes
HD Experienced
Need your input
North Carolina Nursing Homes (about)
North Carolina list of Nursing Homes 
State Long-Term  Care Ombudsman
North Carolina State
Division of Aging
693 Palmer Drive
Caller Box# 29531
Raleigh, NC 27626-0531
Phone:   (919) 733-8395
FAX:      (919) 733-0443
Adult Care Facilities
North Carolina List of adult care homes
These are licensed by the state Division
of Facility Services (Group Care Section)
under State regulations and are monitored
by Adult Home Specialists within
For more information and listings of adult
care homes and independent housing go to
Other State Resources:
 -- Planning Your Estate
The End of Life Care Resources

Medical Review of North Carolina, Inc. (MRNC) is the Peer Review Organization in North Carolina or Medicare. It is responsible for reviewing complaints about the quality of medical care provided by hospitals, home health agencies, ambulatory surgery centers, and skilled nursing facilities. MRNC can be reached at
PO Box 37309
Raleigh, NC 27627

NC Family Caregiver Support
Statewide Resources
NC Carolina Caregiver Programs
Concerns and Resources
Work and Caregiving
Group Respite List -is a service that trains volunteers to offer temporary, part-time relief to unpaid, primary caregivers of cognitively or physically impaired older adults and to provide meaningful social and recreational activities for those receiving care. The respite is scheduled for less than six hours a day, usually for one or two days per week. Some call this service "Caregiver's Day Out."
Institutional Respite - List  is a service that temporarily places older adults, who require constant care and/or supervision, out of their homes to provide their unpaid, primary caregiver with relief from caregiving responsibilities.
List of family caregiver respite care, and family caregiver supplemental services agencies
Free - A practical guide intended to help family caregivers feel less alone and overwhelmed. It offers resources, facts, and advice about caring for a loved one, as well as the caregiver.
Other Information is a screening tool provided by the federal government to help you find government benefits that you may be eligible to receive.
Insurance Consumer Guides  for Getting and Keeping Health Insurance - A guide for each state and the District of Columbia - fifty-one in all. The Guides summarize your protections, and so may not answer all of your questions. They are not a substitute for legal, accounting, or other professional advice.
Special Notices
Check  HDSA's HD National Events Calendar for current events in your area
Support Group
When:       Held quarterly
Time:         7:00 PM
Where:      The Place at Southpark
                    2101 Runnymeade Lane
                    Charlotte NC 28209
Contact:     Pam Lowe

Phone:        (704) 525-2087
Participants: People and families dealing with HD
Mecklenburg County-
Piedmont Chapter
This vibrant and enthusiastic group for people with HD and their families meets quarterly for emotional support and carefully chosen expert speakers.  To learn about their meetings and other activities, call a member of the group at 525-2087 Monday through Thursday from 7 p.m. to 9 p.m.
Waynesville N.C.
(Asheville area)
When:     Call for information
Time:        3:00 PM
Where:    Grace Episcopal Church
Contact    Rachel Webb

Phone:     (828)--369-8976 or
                  Joyce Owens
                  Pam Lowe
Participants: Families dealing with HD 
Winston Salem
When:    call for information
Time:       7-9PM
Where:   Highland Presbyterian Church
                 Winston Salem
Gina Collins  336-922-1366
Joyce Owens 704-480-1730
Pam Lowe at 704-525-2087
State Resources
North Carolina Homepage
North Carolina Medicaid Coverage Groups page lists a brief explanation of each type of program and its benefitsManaged care options for Medicaid recipients are available in all 100 counties. Options include Carolina ACCESS (which includes ACCESS II and III) and Risk Contracting with state licensed HMOs.
Care management is a coordinated care
function that incorporates case finding,
assessment, care planning, negotiation, care
plan implementation, monitoring, and advocacy to assist clients and their families with complex needs in obtaining appropriate services. Most counties in North Carolina have at least one agency that can help manage the care of frail older adults living in the community.
locate services on a county-by-county basis,
including care management services and other
services that are supported with funding under the Home and Community Care Block Grant.
North Carolina Health Choice for Children
(NCHC) A program for low-income working
families who cannot afford health insurance
for their children. NCHC Main Page
help meet the needs of families with
premature infants or children with
developmental disabilities, behavioral disorders, or chronic illness, as well as the professionals who serve these families 
The project's activities impact children and
adults with disabilities across all aspects of
their lives - education, employment, recreation
and independent living. Children and adults
with disabilities are involved in all aspects of
the project-State AT Programs
Are located in the following cities:
Charlotte, Raleigh, Winston-Salem,
Sylva, and Greenville. These centers
display a variety of assistive technology
devices for demonstration and "hands-on"
activities. Each center is open to groups
or individuals by appointment

The Technology Exchange Post - NC classifieds for used assistive technology equipment wanted to buy or sell, maintained by Partnership in Assistive Technology

Misc. State Support 
Family Services-Map by State
Guardianship Programs-A listing of guardianship programs in each state
United Way-Search By Zip Code will provide you with information on the United Way in your area.  If they have a website, they usually have a section called "How Do I Get Help?"  Click on it and look for their "Quick Guide" (To Human Services) help in your area. You can print it out. Most guides are in PDF format and are a great resources to have on your refrigerator!