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#cure4hdandjhd

About Author, Hope

Christmas Is A Time For HOPE

Christmas is a time for HOPE and JOY to prevail over difficulties in our lives.     

I have posted many times about HOPE, and will continue, because HOPE had the power to sustain me through 36 years of not knowing John’s gene status for Huntington’s disease (HD). 

Lora, Cindy and Marcia Marin

After my three sisters-in-law, Lora, Marcia and Cindy died, I had a period of time where HOPE eluded me.  HOPE slipped away and it wasn’t until I finished writing my book in 2017, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying Into a Family At Risk for Huntington’s, that I found HOPE again. Once I felt strong and like myself, I began volunteering for the nonprofit, Huntington’s Disease Society of America (HDSA). 

Being involved with HDSA San Francisco Bay Area Chapter, keeps HOPE in the forefront of my mind and in my heart.

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

 

 

 

 

 

 

 

November 29, 2023 by
HD Clinical Studies, Huntington's Disease

Donald A. King Summer Research Fellowship

The Huntington’s Disease (HD) community may not know that the nonprofit, Huntington’s Disease Society of America (HDSA) funds HD research.   One is the Donald A. King Summer Research Fellowship  which attracts the brightest young scientists into the field of Huntington’s disease research. The Fellowship sponsors undergraduate college students to pursue HD research projects that are conducted over the summer.

These undergraduate fellows, working under the supervision of senior HD scientists, are able to take on unique and crucial research projects that aid in the understanding of HD. They also are able to learn more about Huntington’s disease and the families that are affected, and take interest in the field of HD research early on in their career!

The 2023 Fellowship recipients are:

Samuel Moldenhauer (University of Central Florida) will, under the mentorship of Amber Southwell, PhD, use AI to automate tracing of brain regions and brain volume analysis, which could support faster preclinical development of novel therapies for HD.

Adam Monek (University of Pittsburgh) will work in the lab of Diane Carlisle, PhD, to evaluate the neuroprotective effects of metformin and its role in metabolic regulation in a mouse model of HD.

Sophie Laye (Washington University in St. Louis) will explore the molecular basis underlying neurodegeneration in HD in the lab of Hiroko Yano, PhD, by studying protein interactions with DNMT3A, a protein that plays a key role in DNA transcription.

Kaden Adams (Central Michigan University) will, under the mentorship of Gary Dunbar, PhD, study whether OligoGM1, the isolated bioactive component of a known neuroprotective compound, GM1, will have positive effects like its parent molecule in a model of HD.

We Can Never Lose HOPE…
 

 
November 15, 2023 by
Center of Excellence

Multidisciplinary Care Team In San Francisco Area For Huntington’s Disease Families

Dr. Sharon Sha-Stanford COE Director

Dr. Nelson
UCSF COE Director

Huntington’s Disease Society of America (HDSA) Centers of Excellence are built on the idea of a team that is EXPERT in Huntington’s disease (HD). Each person on the team has clinical expertise, but also experience with the particular issues that can arise in HD, the many variations across patients and families, as well as different ways to plan for, evaluate, and treat these issues as they arise.

At University of California, San Francisco HD Clinic, other key members of the team include a patient care coordinator (Alyson Marcelo) who helps with scheduling, insurance, and connecting patients with clinical team members; two neuropsychologists, Melanie Stephens and Kate Possin, who evaluate HD patients with cognitive symptoms and critically inform the recommendations for work accommodations, disability, or additional help at home; and two research coordinators, Chelsea Chen and Zach Lamson, who provide information to patients and families about HD research opportunities at UCSF and other nearby HD centers.

We Can Never Lose HOPE…

October 25, 2023 by
Center of Excellence

Stanford University Huntington’s Disease Clinic

My blog this week is focused on the second Huntington’s disease (HD) clinic in the San Francisco Bay Area. Stanford has a multidisciplinary team to help HD families have the highest quality to their life when HD threatens their family.  The team consists of:  expert neurologists, psychiatrists, social workers, physical therapists, counselors, genetic counselors, speech pathologists and occupational therapists.

Dr. Sharon Sha-Stanford COE Director

Dr. Sharon Sha is a Clinical Professor at Stanford University and the Director of the Huntington’s disease and Ataxia Clinic .The majority of her clinical and research time is devoted to caring for patients with behavioral neurodegenerative  disorders, finding treatments for them, and training the next generation to do the same.           

The Stanford Movement Disorders Center

Stanford Neuroscience Health Center, 213 Quarry Road, MC 5979 Palo Alto, CA 94304

For patients and appointments, please call the Neuroscience clinic at 650-723-6469

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

 

October 18, 2023 by
Fundraising, Hope

Huntington’s Disease Fundraiser in San Francisco This Saturday

On Saturday, October 14th, The San Francisco Bay Area Chapter of the Huntington’s Disease (HD) Society of America (HDSA) will once again be hosting the Team Hope 5K Walk & Fun Run – San Francisco, at Sports Basement Presidio, along the Golden Gate Bridge in San Francisco, CA. The event breakfast and registration starts at 9:00 AM and the event kicks off at 10:00 AM.  Please join us in the fight against this horrific disease by attending. Come dressed as your favorite hero or villain.

Hero’s & Villains Theme

“Every year I get excited for the SF Bay Area Chapter Team Hope Walks.  It’s an opportunity for HD families to come together as a community to find support and draw strength from each other while supporting HDSA in the battle against Huntington’s Disease.” – Therese Crutcher-Marin, Event Chair & Chapter President.

Huntington’s disease is a fatal genetic disease that affects the nerve cells in the brain and is often described as having ALS, Parkinson’s, and Alzheimer’s disease all at once. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 at risk of inheriting the disease.

We Can Never Lose HOPE…….

 

 

October 11, 2023 by
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

 

September 13, 2023 by
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

 

 

August 2, 2023 by
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…

May 15, 2023 by
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 Excellence: Genetic 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

 

April 26, 2023 by
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.

March 29, 2023 by