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Center of Excellence

Center of Excellence

What Can A Speech Language Pathologist Do For A Huntington’s Disease Patient

Another member of the multidisciplinary care team at a Huntington’s Disease Society of America (HDSA) Center of Excellence is a speech therapist.  You think, how can that discipline help my loved one?

A speech-language pathologist (speech therapist), treats speech and swallowing disorders. They work with babies, children and adults to help improve communication skills. They can help if you have a developmental disorder, neurological condition or injury that prevents you from communicating effectively or consuming food or drinks safely.

Voice & Swallowing Center at UCSF

Stanford Huntington’s Disease Center of Excellence Speech Pathologists:  Phone #650-723-6469

Julie Hicks, MA, CCC-SLP
Senior Speech-Language Pathologist II

Sarah Stranberg, MA, CCC-SLP
Speech-Language Pathologist III

HDSA Family Guide-Speech-Language-Swallowing

From personal experience, when my sister-in-law, Marcia, was struggling  with eating and safely swallowing food or water, my co-workers in hospice suggested we use Thick-It which helped tremendously.

Watch a HDSA webinar on What Can A Speech-Language Do For You 

We Can Never Lose HOPE….

Center of Excellence, HD Advocates

RN’s at HDSA Centers of Excellence Assist Huntington’s Families

Another member of the HDSA Centers of Excellence multidisciplinary care team is the registered nurse.  The HDSA Center of Excellence at the University of California, San Francisco has a nurse, Cecilia Alagappan who is part of the team at the HD Clinic.

She has wide experience with the care of those with neurodegenerative disorders, and has been a leader of our Center of Excellence since its inception. She provides critical expert and practical advice to families dealing with common Huntington’s disease (HD) issues, including coping with behavioral symptoms like irritability or loss of motivation, weight loss, or problems with swallowing.

Cecilia also assists patients and physicians navigate the health care system to obtain needed medications.  As with all the disciplines on the multidisciplinary care team, their goal is to help HD families have the highest quality to their lives on their HD journey.

Find a HDSA Center of Excellence in your area here

We Can Never Lose HOPE…..

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

 

Center of Excellence

Physical Therapy And Huntington’s Disease

This week I’m sharing information on another multidisciplinary care team member at a HDSA Center of Excellence, a physical therapist, who can help your loved one struggling with Huntington’s disease (HD).

Physical therapist, Erica Pitsch, at the HDSA University of California, San Francisco HD Clinic is specialized in the care and rehabilitation of those with neurological disorders. She has been working with HD patients and families for many years, providing evaluations and formulating care plans across the entire disease spectrum, from designing exercise programs to preventing falls to finding the right gadgets to maximize independence. She works with patients in HD clinic for periodic consultations and tune-ups, but is also available for more regular treatment of patients.   

 

 

We Can Never Lose Hope…           

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

Center of Excellence

A Genetic Counselor Can Help Huntington’s Disease Families

On my blog today, I’ll share information on how multidisciplinary care team members at Huntington’s Disease Clinics (HDSA Centers of Excellence) can help Huntington’s disease (HD) families in the San Francisco Bay Area.

Let’s talk about what a genetic counselor can offer your family: The  genetic counselor, Jamie Fong, at UCSF Huntington’s Disease Clinic has specialized training in the genetics of neurodegenerative disease, and has been counseling families and individuals at-risk for HD for many years. She is the lead in the HD predictive testing program, providing information, counseling and support to people at-risk for HD, but also is available to counsel those dealing with a new diagnosis or sharing the news with their families.   

Jamie’s email:  [email protected]

You can find a HDSA Center of Excellence near you here

We Can Never Lose HOPE…….

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

 

Center of Excellence

Multidisciplinary Care Clinic at HDSA Centers of Excellence Can Help HD Families

What Is A Multidisciplinary Care Clinic?

Dr. Sharon Sha, Stanford & Dr. Alexandra Nelson, UCSF

What is multidisciplinary care for Huntington’s disease (HD)? In the San Francisco Bay Area, Dr. Nelson, director at UCSF and Dr. Sha, director at Stanford Centers of Excellence, describe it as, “teamwork based on the complementary expertise of multiple individuals, with a goal of providing compassionate, knowledgeable, and accessible care to families coping with Huntington’s Disease We understand the challenges of living with Huntington’s disease.”

Why is multidisciplinary care especially helpful for HD?

Dr. Alexandra Nelson states, “HD is complex and impacts the person with HD, but also her/his family and other loved ones. Symptoms range from changes in behavior and mood to changes in thinking, to loss of coordination and balance. This complexity requires a team approach, as well as collaboration with the patient and her/his caregivers. No one individual on the team has all the expertise, or the answers. Indeed, working on our multidisciplinary team is an incredibly fulfilling experience – we learn from our patients as well as from each other, so that hopefully we can be more helpful to the next family we work with.”

To find a Center of Excellence close to where you live, please visit: Locate Resources

Stanford HD clinic website                          UCSF HD clinic website 

We Can Never Lose HOPE….

Center of Excellence

How a HDSA Center of Excellence (HD Clinic) Can Help A Huntington’s Disease Family

Over the next several weeks, I’m going to write a series of blogs and posts on my social media platforms regarding how a Multidisciplinary Team at Huntington’s Disease Society of America (HDSA) Centers of Excellence across the U.S. can benefit Huntington’s disease (HD) patients and their families.  There exists expert HD care at 67 distinct medical facilities in 36 states across the nation and Washington, DC.  (see the list below)

Dr. Alexandra Nelson

To get started, let’s hear from Dr. Alexandra Nelson, neurologist at the UCSF Medical Center Huntington’s Disease Clinic as she describes what a multidisciplinary care team can do for you and your family.  “At UCSF, it is teamwork based on the complementary expertise of multiple individuals, with a goal of providing compassionate, knowledgeable, and accessible care to families coping with Huntington’s Disease.”

We Can Never Lose HOPE….

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

 

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..

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

 

 

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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