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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

HD Community

Mara Sifry-Platt Shares Her Perspective on Multidisciplinary Team (MDT) For Huntington’s Disease Families

Mara Sifry-Platt is a genetic counselor at HDSA UC Davis Center of Excellence and HDSA Center of Excellence Partner Kaiser Permanente, Northern California.  She is an integral part of the Multidisciplinary Care Team (MDT) at the two (2) Huntington’s Disease Society of America Centers of Excellence.

Mara is a huge fan of a Multidisciplinary Care Team to care for Huntington’s disease (HD) patients and families.  The core function of a multidisciplinary team (MDT) is to bring together a group of healthcare professionals from different fields in order to determine patients’ treatment plan.

Mara says, “The visits at the HD clinics can be a little long, but the vast majority of people appreciate the whole team approach.  It keeps the patient and family from not having the drive to all those different appointments, not having to pay for all those copays separately and not having to repeat their whole story to each team member”.

Mara Sifry-Platt information

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….

Fundraising

San Francisco Team Hope 5K Walk & Fun Run

Currently, the HDSA San Francisco Bay Area Chapter  is planning the 17th Annual San Francisco Team Hope Walk fundraiser on Saturday, October 14, 2023.

Save the date and register to help in the fight against Huntington’s disease (HD)  and walk in solidarity on the Crissy Field trail with the beautiful backdrop of the Golden Gate Bridge.

Dr. Sharon Shaw and her family

On June 17th, the Chapter hosted the 5th HDSA San Jose Team Hope Run/Walk, and raised $27,615.00! Woo Woo!

There are 50 Huntington’s Disease Society of America (HDSA) Chapters/Affiliates across the country who hold Team Hope Walk/Ride/Run events to fundraise for the nonprofit, HDSA, to fulfill the mission: HDSA is dedicated to improving the lives of everyone affected by HD and their families.

If you are interested in volunteering and using your talents to help fight HD, please contact me at [email protected].  Thank you

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

 

 

Lessons Learned

People Don’t Come Into Our Lives By Accident

Through the years, I came to believe there is no such thing as coincidences, only reason and  purpose.  With that thought in mind, people don’t come into our lives by accident; they are meant to cross our path for a reason.

I came to this conclusion based on three incredibly kind women who came into my life along with John.  Of course, they are my sisters-in-law, Lora, Marcia and Cindy Marin.

Kindness is at once very simple and very complex, with multiple layers and on the simplest level, kindness is showing consideration to others. I witnessed higher levels of kindness from Lora, Marcia and Cindy in the form of forgiveness, unconditional love and tenderness.

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 and sign up for my weekly blog.  https://theresecrutchermarin.com

A Love Story, Watching Their Dance

It’s Not Just A Story About A Family Challenged by Huntington’s

The nonfiction book I penned, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is much more than the Marin Family being challenged by Huntington’s but a story of love, commitment and devotion.

When I set out to write the memoir, my goals were to heighten Huntington’s disease (HD) awareness, honor my three (3) sisters-in-law and generate funds to donate to the nonprofit, Huntington’s Disease Society of America (HDSA).  As the story unfolded, I was always brought back to one of the themes of the book, unconditional love. (other themes in the book are mindfulness and hope)

Watching Their Dance

Watching Their Dance is John and my enduring love story while living in the shadow of the HD.  At the beginning of our marriage and HD journey, John and I committed that HD would not tear us apart, that our love would create a bond so strong that nothing could come between us.

We Can Never Lose Hope…           

theresecrutchermarin.com, is an Author and Huntington’s Disease Advocate website. Go here to read and sign up for my weekly blogs