Huntington's Disease Support Information


Index~HD Search
Convention Scholarship Fund
State HD Support
District of Columbia
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New Mexico
New York
North Carolina
North Dakota
West Virginia
Washington State
Pennsylvania~Delaware Valley
Rhode Island
South Dakota
Wyoming Non-HD Specific Caregiver Support
Miscellaneous State Resources
Other Resources
Click on map for Florida's yellow pages
Florida State Flag  HDSA's
South Florida Chapter & Central Florida Affiliate
South Florida Chapter Contact Info:

Deb Gomberg
12555 Biscayne Blvd.
North Miami, FL 33181
South Florida Chapter 

South Florida Family Services
Ann Graham, B.S.N.
Special Notices
Check the HDSA USF Center of Excellence Calendar of Events for special events and support group meetings.  
You can also check HDSA's Calendar of Events  for other events that may be taking place in Florida or nearby.
Central Florida Affiliate Contact Info:
785 Baffie Avenue
Winter Park, FL 32789
407-719-2291 [cell]
HDSA USF CoE Social Worker
Karen Karle
[727] 644-7070 [cell]
HDSA SE Regional Development Director
Dwayne T. Patterson
3645 Market Place Blvd.
Suite 130 - PMB 288
East Point, GA 30344
Toll Free: 866-905 1116
Georgia & Florida
HD Specific Support Groups

Cape Coral - Lee County
When:    2nd Monday of each month
Time:      6:30 pm
Where:   Alterra Sterling House
               1416 Country Club Blvd.
              Cape Coral, Florida 33990
Facilitator: Constance Stegall
Phone:       (239) 549-8342

Clearwater – Pinellas County
Update December 2005 - This support group has been discontinued effective January 2006 and will no longer meet at Bon Secours.  Karen Karle, the USF CoE Social Worker, is seeking a Pasco site and/or another Pinellas location. When a new location is found, the schedule will be included here.
Delray Beach – Dade County
When:    Last Tuesday of each month
Time:      7:00 pm
Where:   Pinecrest Rehabilitation
               Hospital-East Day Room
               5360 Linton Blvd
               Delray Beach, FL 33484
Contact: Gus Vazac
Phone:    [954] 564-4375
Jacksonville – Duval County
When:    3rd Tuesday of each month
Time:      7:00 pm
Where:   Alterra Sterling House 
               10875 St Augustine Road,
                Jacksonville, FL 32256
Contact: Rebecca Potthast
Phone:   (904) 880-4040 or
Contact: Jason Mundy
Phone:    [904) 376-5330 [cell]
Orlando - Orange County
When:     4th Tuesday of each month
Time:       7:30-9:00 PM
Where:    Florida Hospital  (downtown)
                 Orlando, Florida 32803 
                 Welch Conf Room near cafeteria
Contact:   Karen Milek 
Phone:      407-719-2291 [cell]
Tampa - Hillsboro County
When:    1st Thursday of each month  [Jan. 2006]
Time:      7:00 - 9:00 PM
Where:   University of South Florida HD Clinic
               12901 Bruce B. Downs Blvd.
               Tampa, Fl 33612
Contact: Karen Karle
Phone:    [727] 644-7070
The building is right off parking lot 38G
Other Florida Counties
The HDSA USF CoE is searching for a location in Pasco County to start a support group.  When one is started, it will be posted here.
If you are interested in starting a HD support group in your county, please contact the Social Worker, Karen Karle, 727-644-7070 or via email
TampaBay Area Estate Planning
Elder Care Attorney-Sean Scott has been a tremendous help to the Tampa Bay area HD families.
Caregivers Non-HD Specific
Fronto-Temporal Dementia
Support Group
When:       2nd & 4th Tuesdays every month
Time:        11 a.m. to 1 p.m.
Location:  Mayo Clinic
  Jacksonville, FL
Contact:    (904) 953-7103
Contact:  Karen Karle for time and locations
Phone: [727] 644-7070  
  HDSA Center of Excellence/Genetics
& Other Experienced Physicians
HDSA Center of Excellence
University of South Florida -
Department of Neurology (MDC-55)
Movement Disorders Clinic 
12901 Bruce B. Downs Blvd
Tampa, FL 33612
Serving all Florida HD families.
Languages Spoken: English & Espanola
Clinic Director/Neurologist: 
Juan Sanchez-Ramos, PhD, MD
Schedule:  2nd Thursday of each month
                    9:00 AM to 4:00 P.M.
Contact:   Marci McCall, M.T.S., Clinic Coordinator
Phone:      813-974-6022
FAX:         813-974-7200
Other HD Experienced
Miami/Dade County~East Coast
South Florida Huntington's Disease Clinic
University of Miami/School of Medicine
Department of Neurology
1501 NW 9th Avenue
Miami, FL 33136
Carlos Singer, M.D. - Neurologist
Clinic Hours:   2nd Wednesday of each month
                           10 a.m. to 4:30 p.m
Appointments:  Marie Salvatierra
Phone:                 305-243-6767
Fax:                     305-243-3321
Gainesville/Alachua County
University of Florida
McKnight Brain Institute
100 S Newell Drive Room L3-100
Dept. of Neurology, , Third Floor
PO Box 100236
Gainesville, FL 32610

Clinic:        Mon-Fri 9AM - 4 PM
Contact:   Sarah Munson
Phone:      352-273-5550  
Fax:            352-273-5575     
Dr. Michael S. Okun, M.D. Co-Director
Hubert Fernandez, M.D. -Director of Clinical Trials 
Ramon Rodriguez, MD Director of Clinical Services
Frank Skidmore, MD. Director of VA Services
Other Physicians-HD Patients
Clinical Neurological Specialties
1011 Jeffords Street Bldg. A
Clearwater, FL33756   Map
Phone:            727-443-3295
Ft.  Myers
Bernardo J. Arias , MD
3660 Central Ave
Fort Myers, FL
Phone:  239-931-0717
Orlando/Orange County
Neurological Services of Orlando
1111 South Orange Avenue, 3rd Floor
Orlando, Florida 32806.
Phone:   407-540-1774
Fax:       407-423-2194
Punta Gorda/Charlotte County
The Movement Disorder Society
of Southwest Florida, Inc.
126 East Olympia Avenue Suite 301
Bank of America Building, 2nd floor
Punta Gorda, FL 33950
Medical Director: Dr. Ramon A. Gil,
Contact:  Sally Thimm OTR/L, CDMS
                  Administrative Director
Phone:      941-833-8312
Fax :         941-833-8331
Port Charlotte/Charlotte County
Seabreeze Behavioral Medicine PA
3191 Harbor Boulevard, Suite A
Port Charlotte, FL 33952
Office:    941-766-9555
Fax:        941-766-1511  
Physician: Bernardo J. Arias, MD

Adult Behavioral Counseling Center
3280 Tamiami Trail Number 43
Port Charlotte, FL 33952
Phone: 941-629-2210 
Office: 941-624-4434 
Physician: Bernardo J. Arias, MD
Weston/Clark County
Cleveland Clinic Florida Weston
2950 Cleveland Clinic Boulevard
Weston, FL 33331
Phone:      954-659-5670 EXT 4
Toll Free:  866-293-7766
Appointments:  Monday through Saturday.
Neurologist: Dr. Nestor Galves-Jimenez
Specialty InterestsPD, Huntington’s Disease, Akathisia, Restless Leg Syndrome, Tourettes and Myoclonus; botulinum toxin therapy (for all types of movement disorders)
Other Location Genetic Testing
University of Florida UFHSC
Division of Pediatric Genetics
P.O. Box 100296
Gainesville, FL 32610
Contact:  Heather Stalker,  MSC, CGC
Phone:     352-392-8032
Fax:         352-392-3051
University of Miami
South Florida Huntington's Disease Clinic
Department of Neurology
1501 Northwest 9th Avenue
Miami, FL 33136
Lisa Baumbach-Reardon, Ph.D
Molecular Geneticist/Genetics Counselor
Appointment:  Marie Salvatierra
Phone:                 305-243-6767
Fax:                     305-243-3321
Locate a Physician-Florida
Florida Medical Network

ALF’s/Nursing Homes HD Specific

HDSA Center of Excellence at USF

HDSA South Florida Chapter

Karen Karle, Ph.D.
Social Worker
[727] 644-7070 [cell]
Ann Graham, B.S.N.
Family Services
[305] 274-7411 [Chapter Hotline]

Dr. Karle, as founder and president of Dementia Caregiver Resources, Inc has worked closely with the Florida Department of Elder Affairs and Dementia Caregiver groups throughout Florida.

As the HDSA CoE Social Worker, Dr. Karle maintains a list of ACLF’s and Nursing Homes in Florida where Huntington’s Disease patients currently reside or families have placed loved ones in the past.

Dr. Karle has done in-service training with dementia-related and HD specific ACLF’s and nursing homes in the State of Florida.

The HDSA South Florida Chapter maintains a state-wide listing of ACLF’s and nursing homes with Huntington’s disease experience.

The Chapter, in conjunction with the Foundation for the Care and Cure of Huntington’s Disease, last surveyed the entire state of Florida in 1992. This list is kept up-to-date as information is provided to them.

The Chapter would appreciate families and/or facilities contact them when a HD patient is admitted so that this Florida HD Listing can be kept up-to-date.

ALF's/Nursing Homes -Florida Resources
Florida State Long Term Care
Ombudsman Program
Toll Free
Holland Building, Room 270
600 South Calhoun Street
Tallahassee, FL 32301
 (850) 488-6190
(850) 488-5657
The Long -Term Care Ombudsman Program (LTCOP) takes complaints from or on behalf of residents of long-term care facilities (such as nursing homes and assisted living facilities) and advocate on their behalf - at no charge! 
View all our free servicesRequest a complimentary information or file a complaint online, or contact us toll-free at 888-831-0404.
What to Consider When Choosing an ALF
When Choosing an Assisted Living Facility
Florida's Nursing Home Guide (the Guide) is part of AHCA's ongoing effort to provide infor-mation to consumers faced with difficult health care decisions. This web site allows you to search for a nursing home by geographic region or by the characteristics of the nursing homes. En Espaņol
(ALFs) provide housing, meals, personal care services, and supportive services to older persons and disabled adults who are unable to live independently. ALFs are intended to be an alternative to more restrictive, institutional settings for individuals who need housing and supportive services, but who do not need 24-hour nursing supervision. ALFs are regulated in a manner to encourage dignity, individuality, and choice for residents, while providing reasonable assurance for their safety and welfare. 
CARES Program- is a federally mandated nursing home pre-admission assessment program. Persons who are applying for Medicaid nursing home care are assessed by either a CARES nurse or social worker, with medical review by a physician prior to approval.
Nursing Home Watch - This information is available in two formats.
Nursing Home Compare - The primary purpose of this tool is to provide detailed information about the performance of every Medicare and Medicaid certified nursing home in the country
Adult Day Care
Adult Day Care Locator - provide therapeutic programs of social and health services as well as activities for adults who have functional impairments in a protective environment that provides as non-institutional an environment as possible.
Adult Family Care Home Locator -  (AFCHs) are private residences that provide housing, meals, and personal care services to older persons and disabled adults who are unable to live independently. Unlike assisted living facilities, AFCHs are owned and operated by licensed AFCH providers who are required to live with the residents they serve. In addition, AFCHs are limited to a total of 5 residents. AFCHs are intended to be an alternative for more restrictive, institutional settings for individuals who need housing and supportive services, but who do not need 24-hour nursing supervision. Contact:    850-14-2000
Adult Day Health Care - programs are similar to Adult Day Care programs, except that they also provide health care (medical) services in an outpatient setting. Services under an Adult Day Health Care program are targeted to adults with physical and mental disabilities.
Florida State Specific Resources

Click here ->Florida State Resources

Florida specific information for state agencies, Abuse, Adults, Caregiving, Children, Dental, Disabilities, Estate Planning, Financial Help,

Health Medicaid, Legal, Long Term Care, Guardianship, Mental Health, Prescription Drug programs, Respite Care,  Therapy, Transportation and Veterans.
Other Resources

Information on Assistive Technologies, Disability, Guardianships, Hospices, Medicaid, Medicare, Patient Advocacy groups, Social Workers, Social Security to United Way!

Click here ->Other Resources

Information on Applying for Government Benefits, Disability & SSDI, Estate Planning, Financial Aid Resources, Insurance’s, Long Term care and Huntington's Disease specific resources