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Center of Excellence

Center of Excellence

Huntington’s Disease Families Benefit From HDSA Centers of Excellence

To expand on my last blog, Hospice, Palliative Care and HDSA Have Similar Goals for Patients, today I’m sharing information on the Centers of Excellence (COE), 55 across our nation with 10 partner sites, funded by the nonprofit, Huntington’s Disease Society of America (HDSA).   UCSF HD Clinic    Stanford HD Clinic 

HDSA doesn’t advertise their Centers of Excellence as palliative care, but it is palliative care; treating symptoms to improve quality of life and then connecting to community supports that are palliative (support groups, in home assistance, education events).

Huntington’s disease, a rare, fatal, genetic brain disorder that has symptoms of ALS, Parkinson’s and Alzheimer’s simultaneously, has NO CURE and slowly progresses over 10-20 years.

I believe it is vital for Huntington’s disease families to connect with a Center of Excellence to  address issues as a family’s HD journey changes. The interdisciplinary team at the COE has a discipline/medication for just about every symptoms that occurs in HD patients.

An example:  People with HD may inadequately chew foods, and commonly add more mouthfuls of food before swallowing. Poor coordination may lead to frequent choking on liquids and on solid food. Aspiration of liquids or food may lead to pneumonia or even to death by choking.

To address swallowing issues a referral can be made to a speech therapist who can help the patient and family address it.

We Can Never Lose Hope…           

I’m a Huntington’s disease (HD) advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author.  Visit my website  https://theresecrutchermarin.com

 

March 15, 2023 by
Center of Excellence

Stanford HDSA Center of Excellence Huntington’s Disease Education Day

Dr. Sharon Sha-Stanford COE Director

To celebrate Huntington’s Disease (HD) Awareness Month, Stanford Center of Excellence is hosting a Virtual Education Day on Saturday, May 7th from 8:30 a.m. to 12 noon.  Dr. Sharon Sha, MD, MS, and her team at Stanford Center of Excellence in Stanford CA, is heightening awareness of the disease during HD Awareness Month.  She and her colleagues will present current information on Huntington’s disease to the HD community everywhere.  #LetsTalkAboutHD

Register here for the Education Day

 

AGENDA

                          

We Can Never Lose HOPE..

May 3, 2022 by
Center of Excellence, HDSA

There are Huntington’s Disease Experts Across the U.S.

When my three (3) sisters-in-law were struggling with Huntington’s disease (HD), in the 1990’s, there were few neurologists who were experts in Huntington’s disease and other movement disorders.

Today, there are 54 Huntington’s Disease Society of America (HDSA) Centers of Excellence across the U.S. with doctors specializing in movement disorders like HD.  The HDSA San Francisco Bay Area Affiliate has partnered with two local Centers of Excellence, Stanford and University of California San Francisco Medical Center, to heighten HD awareness so HD families can find their way to these HD clinics where they will have support from an interdisciplinary team.

At Stanford Center of Excellence, two compassionate doctors, Dr. Sharon Sha and Dr. Veronica Santini, are Co-Directors of the  Huntington’s Disease and Ataxia Clinic and both are movement disorders specialists.

At University of San Francisco Center of Excellence Huntington’s Disease Clinic, has three expert neurologists, Dr. Michael Geschwind, Dr. Alexandra Nelson, Dr. Carmen Dietiker to support the San Francisco Bay Area HD community.

We Can Never Lose HOPE……   

Author Therese Crutcher-Marin

I’m a Huntington’s disease (HD) advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author.  Visit my website and learn about HD:  https://theresecrutchermarin.com

 

 

January 11, 2022 by
Center of Excellence, Resources

Huntington’s Disease Society of America Centers of Excellence

Louise Vetter, CEO and President of the nonprofit, Huntington’s Disease Society of America (HDSA), has made increasing  the number of HDSA Centers of Excellence, in the U.S., as one of her priorities in her 10- year leadership at HDSA.  Louise said, “We are deeply committed to helping families affected by HD access experienced care.”     

In 2020, HDSA Centers of Excellence (COE) program expanded to 50 Centers from 47 in 2019, and from just 20 in 2015. The HDSA Centers of Excellence are multi-disciplinary care teams with expertise in Huntington’s disease that share an exemplary commitment to providing comprehensive care.

Currently, there are now 54 COE’s and California was a blessed to have seven (7) COE’s at Stanford University, University of California, San Francisco, University of California, Davis, University of California, Irvine, University of California, Los Angeles, and University of California, San Diego.  HDSA Center of Excellence Partners:  Kaiser Permanente Northern California.

Find an HDSA Center of Excellence In Your Area

When Huntington’s disease families connect to a Center of Excellence, they will find support and invaluable resources to help their family as they struggle with the many challenges of HD.

We Can Never Lose HOPE…….

Author Therese Crutcher-Marin, HD Advocate

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October 14, 2021 by