Genetics Northern California

Huntington Disease/Genetic Movement Disorders

Kaiser Permanente in Northern California has a team of people dedicated to providing excellent care for patients and their families who are dealing with genetic movement disorders. We strive to help people who are affected, as well as their family members, live as well as they can, with courage, dignity, and grace. 
Genetic Movement Disorders Clinic Flyer (pdf)

Clinic Contact Information

Kaiser HD Clinic Providers:

Suketu Khandhar, MD Movement Disorder Neurologist      (916) 973-6860
Mark Lipson, MD Geneticist                                                      (916) 614-4785
Kamer Tezcan, MD Geneticist                                                  (916) 614-4794
Billur Moghaddam, MD Geneticist                                           (916) 474-2516
Brad Briercheck, MD Psychiatrist                                            (916) 973-5300
Julie Hylton, MD Psychiatrist                                                    (916) 973-5300
Julie Wood, MD Psychiatrist                                                     (916) 973-5300
Elle Tadina-Siau, MSW Social Worker-Genetics                   (916) 614-4869
Jeanine Perry, PT Physical Therapist                                   (916) 614-4010
Ashley Brazil, MS Genetic Counselor                                   (916) 614-5042
Cassandra Farrar, MS Genetic Counselor                          (916) 614-4558
Amanda Hanson, MS Genetic Counselor                           (916) 614-4782
Mara Sifry-Platt, MS Genetic Counselor/Coordinator         (916) 474-2512

 

Kaiser Genetics Dept Appointment information (916) 614-4075
Palliative Care: 916-474-6590 - ask for Stephanie Andre, LCSW.


UC Davis HD Center of Excellence:

We have a very close relationship with the UC Davis HD Center of Excellence and often provide joint educational opportunities. Also, Kaiser members are most welcome to participate in research and to utilize the HD Social Worker who is partially funded through HDSA.

 

Social Worker: Lisa Mooney, LCSW (916) 734-6277
e-mail: lmooney@ucdavis.edu
Research Assistant: Amanda Martin (916) 734-3541
e-mail: alema @ucdavis.edu


WHO TO CONTACT:
-Social Service/Support needs: Elle Tadina-Siau, MSW@ Kaiser or Lisa Mooney, LCSW@ UCD
-For information about Research: Amanda Martin at UCD
-To schedule an appointment with our clinic: either the main genetics number or Mara Sifry-Platt

 

HDSA Northern California-a wonderful local support organization
PO Box 161238
Sacramento, CA 95816-9998
Natalie Carpenter-Regional Development Director: ncarpenter@hdsa.org 949-542-3907
Dick Hackenberg-President: E-mail: (415) 710-7570 Hack1276@yahoo.com


Conditions seen in the Genetic Movement Disorders Clinic
  • Dentatorubral-Pallidoluysian Atrophy (DRPLA)
  • Familial Paroxysmal Kinesigenic Dyskinesia (PKD)
  • Fragile X-Associated Tremor/Ataxia Syndrome (FXTAS)
  • Friedreich’s Ataxia (FA)
  • Hereditary Dystonia
  • Hereditary Parkinson Disease
  • Hereditary Spastic Paraplegia (HSP)
  • Huntington Disease (HD)
  • Spinocerebellar Ataxias (SCAs)
  • Other unspecified hereditary ataxias or movement disorders

What is Huntington disease?
Huntington disease (HD) is an inherited condition that causes changes in the brain which lead to uncontrolled movements, a decline in thinking abilities, as well as emotional and behavioral problems. 

Huntington disease can start at almost any age. However, the first symptoms usually begin between the ages of 30 and 50. The earliest symptoms can include mood disturbances, balance problems, involuntary movements, and personality changes. Symptoms usually appear gradually and vary from person to person. The condition is slowly progressive over a period of 10 to 25 years. There is no cure at this time, however, researchers are working very hard to find treatments to improve the quality of life for those with Huntington disease. Stem cell research and protein lowering therapies are showing some promise as new therapies that may slow progression of the disease and hopefully lead to a cure in the future.

Huntington disease affects all sexes, races, ethnic groups, and ages. It is dominantly inherited so that each child of a parent with Huntington disease has a 50% chance of inheriting the gene that causes the condition. A person who inherits the changed gene will eventually develop Huntington disease. If a person doesn’t inherit the HD causing gene, they cannot pass the condition onto their children.

Genetic testing for Huntington disease and other genetic movement disorders
At Kaiser Permanente, genetic testing can be done as a diagnostic test in someone who is already showing symptoms, or as a predictive (pre-symptomatic) test in someone before any symptoms begin. The process is different for diagnostic and predictive testing. 
  • Diagnostic testing is done to confirm a clinical diagnosis in individuals showing signs and symptoms of genetic movement disorders, like HD. This type of testing is usually ordered by a Neurologist or Geneticist. 
  • Predictive testing (pre-symptomatic testing) is done when there is a family history of a genetic movement disorder, but the person requesting testing does not have any symptoms of the condition. Predictive genetic testing is only available through the Genetics department and can involve several in-person appointments to address the sensitive issues around this type of testing.

HD video

Predictive Testing for Huntington Disease (11:39) - An 11 minute Kaiser Permanente video about predictive testing. https://www.youtube.com/watch?v=4HW5YdgM4zs

The Kaiser Permanente Predictive Testing Program has been offered in San Jose since 1989. The majority of Kaiser Permanente members seeking pre-symptomatic genetic testing for HD are seen here. In 2003, the Sacramento Medical Center also began offering predictive testing. A genetic counselor is available by phone at both of these medical centers to answer general questions about the testing options and process.

PREDICTIVE TESTING PROGRAM - SAN JOSE
This program is open to all Kaiser Permanente Northern California members with a family history HD or another genetic movement disorder.

A team of providers is involved including:

Our Predictive Testing Program is based on guidelines from national and international groups with HD expertise. A person seeking predictive genetic testing is seen by the team for several visits in order to address all aspects of pre-symptomatic testing. A person is not obligated to complete the testing process and may stop at any time.

Given the sensitive nature of predictive testing for HD, the program maintains maximum confidentiality possible within the Kaiser Permanente system. The predictive testing program does not provide on-going clinical evaluation for signs and symptoms of HD. Local neurologists with expertise in movement disorders or the Genetic Movement Disorder Clinic in Sacramento are available as needed.

For more information about this program please contact:
Taryn Rosenthal MS, LCGC
Vinaya Murthy, MS, LCGC
Genetic Counselors - KP San Jose
(408) 972-3300 Main line

GENETIC MOVEMENT DISORDER CLINIC - SACRAMENTO

The Clinic Team
  Clinic Coordinator: Mara Sifry-Platt, MS

The Sacramento Genetic Movement Disorder Clinic provides multispecialty care for patients and their families who are dealing with Huntington disease or other inherited movement disorders. Both diagnostic (symptomatic) and predictive (pre-symptomatic) genetic testing is available for Huntington disease and other disorders.

The Genetic Movement Disorder Clinic has been recognized as an HD Center of Excellence by the Huntington's disease Society of America (HDSA). As a Center of Excellence we partner with UC Davis to offer research opportunities, family support, and education events. However, medical care is provided through our team at Kaiser Permanente.

Clinics are usually held monthly at Kaiser Sacramento. Any Kaiser Permanente member from Northern California is welcome to attend. For those who live outside the Sacramento area, recommendations from a yearly clinic visit can be shared with a local provider using our electronic medical record system. Video visits with some of the team members may also be available.

For more information about this clinic please contact:

Mara Sifry-Platt, MS, LCGC
Genetic Counselor - KP Sacramento
(916) 474-2512 or (916) 614-4075

SUPPORT, RESOURCES, & RESEARCH:
Our team remains available to provide ongoing support but another great resource is the HDSA Social Worker for Northern California.  Anyone who has been touched by HD in some way may contact her:

Lisa Kjer, MSW, LCSW
HDSA Center of Excellence
UC Davis Medical Center
(916) 734-6277
lmooney@ucdavis.edu

Support iconSUPPORT GROUPS
There are many support groups in Northern California.  Due to the nature of these groups please make contact to confirm time/place.


To find a support group near you: http://hdsa.org/about-hdsa/support-groups/
Online support groups: http://hdsa.org/about-hdsa/support-groups/

All support groups serve patients and family members, unless otherwise stated.

Youth group

YOUTH SERVICES

Youth Services

HDSA National Youth Alliance (HDSA NYA): HDSA’s National Youth Alliance (NYA) motivates youth to get involved in their local HDSA Chapters, Affiliates, and Support Groups in efforts through education, fundraising, advocacy and awareness for Huntington’s disease. The NYA is a collection of children, teens and young adults from across the country ages 9-29 who are impacted by HD. It is our mission to not only support young people within the HD community, but also inspire the youth of HDSA to get involved in the battle against HD and be proactive in this fight. We are dedicated to making ours the last generation with HD.
http://nya.hdsa.org/#our-mission


Huntington Disease Youth Organization (HDYO): HDYO aims to provide support to young people (kids, teens and young adults under the age of 25) impacted by Huntington’s disease around the world. We seek to drastically improve the amount of educational information provided to young people and their families with regards to Huntington’s disease. Also, HDYO looks to improve support for young people both locally and globally, by collaborating with national Huntington’s disease associations around the world to improve youth support in their area.
http://en.hdyo.org/


HD-COEHDSA CENTERS OF EXCELLENCE

Northern California HDSA Centers

HDSA CENTER OF EXCELLENCE PARTNER KAISER PERMANENTE, NORTHERN CALIFORNIA
1650 Response Road,, 3rd Fl, Suite 3B, Sacramento, CA 95815
mara.sifry-platt@kp.org
Website: mydoctor.kaiserpermanente.org/ncal/specialty_clinics/huntington_disease.jsp
Suketu Khanhdar, MD
916-614-4075
Mara Sifry-Platt, MS, CGC
Elle Tadina-Siau, MSW

HDSA CENTER OF EXCELLENCE AT UNIVERSITY OF CALIFORNIA DAVIS MEDICAL CENTER
4860 Y Street, 0100, Sacramento, CA 95817
lmooney@ucdavis.edu
Website: www.ucdmc.ucdavis.edu/huntingtons
Vicki Wheelock, M.D./Sasha Duffy, DO
916-734-6277
Lisa Mooney, LCSW

HDSA CENTER OF EXCELLENCE AT UNIVERSITY OF CALIFORNIA, SAN FRANCISCO
1500 Owens Street, Ste. 320, San Francisco, CA 94158
Eileen.Pedersen@ucsf.edu
Website: memory.ucsf.edu
Michael Geschwind, MD, PhD/ Alexandra Nelson, MD, PhD
Memory & Aging Center
415-353-2187
Eileen Pedersen

HDSA CENTER OF EXCELLENCE AT STANFORD UNIVERSITY
213 Quarry Road, Stanford University Medical Center, Ste 301, Palo Alto, CA 94304
Website: med.stanford.edu/neurology/divisions/md.html
Veronica Santini, MD, MA/ James, Tetrud, MD/Laurice Yang, MD/Kathleen Poston, MD/Hokuto Morita, MD/Melanie Lising, MD/Helen Bronte-Stewart, MD/Sharon Sha, MD, MS
650-723-6469


HDSA CONTACT INFORMATION

National and Local HDSA Contacts

HDSA National
Huntington Disease Society of America: www.hdsa.org
888-HDSA-506 (888-437-2506)
To find services near your home: http://hdsa.org/about-hdsa/locate-resources/


Pacific Southwest Region (Arizona, California, Nevada, Utah)
Natalie Carpenter
Regional Development Director, Pacific Southwest & Manager, Field Services
27702 Crown Valley Parkway Suite D-4 #336
Ladera Ranch, CA 92694
Phone: (949) 542-3907
Fax: (949) 542-3976
ncarpenter@hdsa.org


HD RESEARCH

Information about participating in research

Five Good Reasons for Participating in HD Research

  1. You’ve always wanted to help
  2. You want to contribute to the efforts for a cure/effective treatment
  3. You have time
  4. You care about HD research and future generations
  5. Being in research makes you feel like you are “doing something” about HD

For more information about participating in research please call:

Sacramento
UC Davis Medical Center
Amanda Martin
(916)-734-3541

San Francisco
UC San Francisco
Memory& Aging Center
Research inquiries: (415) 476-3722

Palo Alto
Stanford University Medical Center
(650)723-2300 (general research number, ask for Neurosurgery)

You can also search for other research studies using the following link: https://clinicaltrials.gov/


Last reviewed: November 17, 2017
Reviewed by: Mara Sifry-Platt, David Witt, Kimberly Barr