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#cure4hdandjhd

HD Awareness, Resources

#LetsTalkAboutHD

May is Huntington’s Disease Awareness Month

Dawn Green and I are President’s of a Huntington’s Disease Society of America (HDSA) Chapter; Dawn leads the HDSA Northern California Chapter and I organize the HDSA San Francisco Bay Area Chapter.  HDSA is a nonprofit and 90% volunteer based.  There are 53 Chapters and Affiliates across the U.S. and all are managed by volunteers.

Huntington’s disease (HD) is a rare, fatal, brain disorder that has the symptoms of ALS, Parkinson’s and Alzheimers, simultaneously.  There is NO CURE.

Because HD is very rare, HDSA’s business model focuses on its Mission Statement:  HDSA is dedicated to improving the lives of everyone affected by Huntington’s disease and their families.  HDSA fulfill’s their mission by providing programs and services to HD families across our nation so they may have the highest quality to their lives on their long HD journey. 

HDSA’s Vision Statement:  A World Free of Huntington’s Disease HDSA also conducts research in the search for a cure or

During this important month for Huntington’s disease, please go to HDSA.org to learn about the disease and consider making a donation to help in the fight against this horrific disease.

List of resources:

Online Support Groups: HDSA.ORG/OSG

PatientsLikeMe: HDSA.ORG/PLM

Telehealth: HDSA.ORG/TELEHEALTH

HD Trialfinder: HDTRIALFINDER.ORG

HDSA’s National Youth Alliance: HDSA.ORG/NYA

Youth Mentorship Program: HDSA.ORG/YMP

Disability Resources: HDSA.ORG/DISABILITY

Locate Resources in Your Area: HDSA.ORG/LOCATERESOURCES

We Can Never Lose HOPE…

Genetic Test

Are You Considering Testing for Huntington’s Disease?

Deciding whether to be tested for Huntington’s disease (HD) is a personal decision and a very, very difficult decision that will change your life.  John was tested in 2016 and we are forever grateful that he did not inherit the mutated huntingtin gene from his mother. “The HTT mutation that causes Huntington disease involves a DNA segment known as a CAG trinucleotide repeat . This segment is made up of a series of three DNA building blocks (cytosine, adenine, and guanine) that appear multiple times in a row.”

Read an article fromHDSA UC Davis Center of ExcellenceGenetic Testing Program for Huntington’s Disease 

Please watch the two (2) video’s to help when considering to test for Huntington’s disease.

QUICK QUESTION VIDEO: Why would people want to test for Huntingtons Disease?

Video on Predictive Testing for Huntington’s Disease 

with Mara Sifry-Platt, genetic counselor at HDSA Center of Excellence UC Davis Health System

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 Advocates

Huntington’s Disease Advocate-Kate Miner

Kate at a HDSA Convention with Michael Miller

Kate Miner is my hero for many reasons.  She’s beautiful, a talented actress, musician and dedicated Huntington’s Disease advocate.  Her family discovered a few years back that Huntington’s disease ran in the family. Her mother and two sisters tested gene-positive, while she did not.

Jenne Colar-Dark, Kate’s sister, is also an advocate and is on HDSA Board of Trustees.

I loved Kate in the TV series, Shameless, and I hope to see her again in another TV series.

Watch Kate Miner’s passionate video about Huntington’s disease.

Kate is involved in the HDSA Annual Freeze HD event every year that takes place in Los Angeles that supports the nonprofit, Huntington’s Disease Society of America. Last year, the 8th Annual Freeze HD raised more than $200,00.00.  She brings her celebrity friends who are very generous.

Thank you Kate, for all you do for the Huntington’s disease community and many thanks to all who supported the Freeze HD event.

We Can Never Lose HOPE… 

To help in the fight against Huntington’s disease, please make a donation to    Huntington’s Disease Society of America.  Every dollar helps provide services and programs that help HD families have a highest quality to their lives on their HD journey. Thank you.

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

 

Hospice, Huntington's Disease

Hospice, Palliative Care and HDSA Have Similar Goals For Patients

As a Huntington’s disease (HD) Advocate and retired hospice professional, explaining the following three types of care is important for the HD community to know about when caring for a loved one with the disease.  You can find these programs in your community.

The mission/goal of hospice care, palliative care and Huntington’s Disease Society of America have a common thread; a kindred objective that connects the three of them.

Hospice care focuses on the care, comfort, and quality of life of a person with a serious illness who is approaching the end of life.                   

Palliative care is meant to enhance a person’s current care by focusing on quality of life for them and their family. 

The nonprofit, Huntington’s Disease Society of America, focuses on improving the lives of everyone affected by Huntington’s disease (HD) and their families. Find Help

So, what is the common thread with these three approaches to care?  All three concentrate on improving the quality of a person’s life when challenged with a life threatening illness; like Huntington’s.

We Can Never Lose HOPE..

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

 

Fundraising

Kate’s Single Batch Toffee Fundraiser for Huntington’s Disease Research

This year, once again, Kate Carrier, owner of Kate’s Single Batch Toffee in San Rafael CA is selling her delicious toffee and donating $10 per box sold to the nonprofit, HDSA San Francisco Bay Area Chapter.

The toffee is delicious and melts in your mouth.
            Every dollar helps in funding Huntington’s Disease research because that is how we are going to eradicate this horrific disease.

Order a box or two through March 9th, 2023: https://katestoffee.com/products/huntingtons-disease-fundraising-toffee-box

Huntington’s disease (HD) is a brain disease that is passed down in families from generation to generation. HD has the symptoms of ALS, Parkinson’s and Alzheimer’s at one time and it strikes young.  And there is NO CURE.

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

Volunteers

HDSA San Francisco Bay Area Chapter

I am thrilled to announce that the HDSA San Francisco Bay Area Affiliate has a NEW STATUS.  We are now the

HDSA San Francisco Bay Area CHAPTER 

It’s very exciting and it could not have happened without the help and support of the Leadership Team; Uma Thontakudi, Steve McConoughey and Jay Denhart-Lillard.

Many thanks go to the Board members who helped the Affiliate realize its goal of become an official Chapter. Everyone on the Board is a volunteer as Huntington’s Disease Society of America is 90% volunteer based.

List of SF Bay Area Chapter Board Members

  • Therese Crutcher-Marin – President
  • Uma Thontakudi – Vice President
  • Jay Denhart-Lillard – Secretary
  • Keith Marin – Treasurer
  • Steve McConoughey
  • Brad Bechtel
  • Ragheb Ashar
  • Fran Marin
  • Heather Williams
  • Nishtha Agale

Advisory Board Members

  • Dr. Michael Geschwind-UCSF
  • Dr. Alexandra Nelson-UCSF
  • Dr. Cameron Dietiker-UCSF
  • Dr. Sharon Sha-Stanford
  • Dr. Kyan Younas-Stanford

We Can Never Lose Hope…           

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

 

HD Clinical Trials

HDSA Webinar on Why Clinical Trial VIBRANT-HD Was Stopped

  Disappointing news for the Huntington’s disease community from Novartis Pharmaceutical Company regarding stopping the clinical trial VIBRANT-HD.  Read full article here

“Tucked into its latest earnings report, Novartis confirmed to investors that it has stopped developing an experimental drug for Huntington’s disease.

The reason, according to Novartis, was an “overall assessment of the risk-benefit profile” observed in a mid-stage clinical trial named VIBRANT-HD. In August, Novartis said it had temporarily suspended dosing in the study, after discovering that some patients treated with the drug, known as branaplam, were experiencing nerve damage.”

Register for Webinar on February 22, 2023

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

 

Love

I Took A Risk For LOVE

challengesEvery day families around the world are confronted with challenges in their lives; a devastating Huntington’s disease (HD) diagnosis, a cancer diagnosis, a challenging medical diagnosis, an autistic child, a miscarriage, a significant death, divorce and many other threats.  I don’t know of a family that has not had one at some time in their life.                                  With that said, I took a risk for LOVE with my then boyfriend John, who I ultimately married, with an unknown gene status for Huntington’s disease.  I decided that I was willing to take that risk because I believed,Love that ‘endures all things’ is love that hopes in the face of circumstances that often seem dark”.

John and I had dark times, walking beside Lora, Marcia and Cindy, John’s three sisters, on their HD journey for over 24 years.  Plus, living at risk for HD is stressful and can challenge a relationship, but John and showed the world that love can conquer any hardships, difficulties, and challenges.

We Can Never Lose HOPE…..

To read John and my love story while living in the shadow of HD, read Watching the Dance Huntingtons Disease my memoir, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family at Risk for Huntington’s

I’m a Huntington’s disease 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

 

 

 

 

 

 

 

 

 

HD Awareness

A New Diagnosis of Huntington’s Disease

It’s a shock when families learn that Huntington’s disease is in their family.  I remember in 1978 when my three (3) sisters-in-law, Lora, Marcia and Cindy found their mother’s death certificate from Napa State Hospital and the underlying cause of death was Huntington’s chorea.

HDSA Social Workers are often the first voice that someone new to #HuntingtonsDisease may hear. #SocialWorkers offer information, education & access to community-based services within a specific region.  Lisa Kjer-Mooney at HDSA UC Davis Center of Excellence is an awesome social worker that can help you find resources and support in Northern California.   

Find a social worker in your area

We Can Never Lose HOPE…..

Author Therese Crutcher-Marin

I’m a Huntington’s disease 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