Browsing Tag

#HDawareness

Resources

Online Silent Auction Supports Community & Social Support for Huntington’s Disease Families

Author Therese Crutcher-Marin, HD Advocate

The HDSA San Francisco Bay Area Affiliate is hosting an Online Silent Auction to help fund resources available to individuals or a family when they learn that their mother, father, grandmother, etc. has or had Huntington’s disease (HD), like my family did.  It’s life changing. 

The good news is that the nonprofit, Huntington’s Disease Society of America (HDSA) has grown over the years and offers many resources to HD families.  Unfortunately, at this time, there is no cure or therapy for the rare, fatal, genetic brain disorder yet, but the resources available can greatly improve the quality of life to a person struggling with the disease.

To view all HDSA online resources, visit  HDSA Community & Social Support website.

 

We Can Never Lose HOPE…

 

 

 

 

 

 

HDSA Fundraising events

Huntington’s Disease Virtual Team HOPE Walks In San Francisco Bay Area

The HDSA San Francisco Bay Area Affiliate is hosting two upcoming fundraisers to support two (2) HDSA Centers of Excellence; at Stanford and UCSF Medical Center, three (3) Huntington’s disease (HD) local support groups in Palo Alto, El Cerrito and Mill Valley and many online free resources available to HD families in the San Francisco Bay Area and across the U.S.

We had hope that we could host in-person events but changed to Virtual because of the concerns over the Delta Variant.

The committee members for the San Jose Team Hope Run/Walk and the San Francisco Team Hope Walk invite you to walk with them and help in the fight against HD; a rare, fatal, genetic brain with NO CURE.  A VIRTUAL RUN/WALK is where you chose to run/walk; in your driveway, neighborhood, favorite park of on a treadmill.  

When you donate $30 to either fundraiser, you will be mailed a 2021 HDSA Team Hope Walk purple T-shirt.  (My favorite color)

Click here to sign up for the San Jose event where the top three (3) 10K runners will receive a medal. 

Click here to sign up for the San Francisco event

 

 

 

 

   We Can Never Lose HOPE………

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

Please make a donation to the nonprofit, Huntington’s Disease Society of America, to help fight HD.

 

HD Awareness

The Rarity of Huntington’s Disease in the San Francisco Bay Area

The San Francisco Bay Area is huge; approximately 7.75 million live in the North Bay, South Bay and East Bay. 

Because Huntington’s disease (HD) is a rare disease it affects approximately 100 people per million or 10 per 100,000.  Juvenile Huntington’s disease (JHD) occurs in approximately 16% of all cases. Huntington’s disease is not prevalent within any particular population. All races and ethnic groups, and both sexes are affected.

So, to put that in perspective, it equates to approximately 700 individuals in the Bay Area that are struggling with Huntington’s disease. 

     THAT’S HOW RARE HUNTINGTON’S DISEASE IS!!

My plea to the San Francisco Bay Area Residents is to please support the HDSA San Francisco Bay Area Affiliate‘s two (2) upcoming fundraisers to help in the fight against this rare, fatal, genetic brain disorder with NO CURE.

The 3rd Annual San Jose Team Hope 10K Timed Run & 5K Walk on Saturday, Sept. 18, 2021 at Campbell Park in Campbell CA. Runners will be timed by Record Timing and the top three runners will receive a medal. Sign up here

The 15th Annual San Francisco Team Hope 5K Walk & Fun Run on Saturday, Oct. 2, 2021 at Chrissy Field, Sports Basement in San Francisco.  Sign up here 

 

 

 

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:  https://theresecrutchermarin.com

Please make a donation to the nonprofit, Huntington’s Disease Society of America, to help fight HD.

 

HD Awareness

FREE Continuing Education-PT, OT, Social Worker, Genetic Counselor

Please visit  https://hdsa.org/healthcare-professionals-resources/  to sign up for CEU classes

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:  https://theresecrutchermarin.com

Please make a donation to the nonprofit, Huntington’s Disease Society of America, to help fight HD.

 

 

HD Advocates

Huntington’s Disease Champions

There are many Huntington’s disease (HD) champions among us and many that are gone from our sight; some are celebrities, some everyday people who are tirelessly heightening awareness of HD.           

San Francisco Bay Area Affiliate Volunteers

Some champions among us are:  Musician Kate Miner, Pitcher Joe Smith, Journalist Charles Sabine, Scientist Nancy Wexler, movie producer Chris Furbee, Dr. Ed Wild, Dr. Jeff Carroll, Coach Mark Helfrich, Health & Fitness Guru Shana Verstegen, Louise Vetter and Drummer Trey Grey. (There are others that belong on the list)     Those gone from our sight but not gone from our hearts are Woody & Marjorie Guthrie, Dr. George Huntington. 

Lora, Marcia & Cindy

My sisters-in-law, Lora, Marcia and Cindy, are my  champion’s as they are the driving force behind what I do for the Huntington’s disease community.

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. Today, there are approximately 41,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. 

The nonfiction book I penned, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on my author website  https://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.

100% of the proceeds from my book is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA).

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HD Awareness

Marin (Cahoon) Family Hit Hard by Huntington’s Disease

Phyllis Marin

As we celebrate Huntington’s Disease Awareness Month, I reflect on the Marin Family’s Huntington’s disease journey through the generations.  John’s mother side of the family, the Cahoon’s, battled Huntington’s disease (HD) and it’s overwhelming how many members of this family were affected.

HD is a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Alzheimers and Parkinson’s disease.  There is NO CURE and when a parent has HD, the children have a 50/50 chance of inheriting the mutated huntingtin gene that causes the disease.

The Cahoon family history of  Huntington’s disease dates back at least 4 generations. 

John’s great grandfather- Wilbert D. Cahoon

John’s grandfather-Charles Wilbur Cahoon

John’s mother-Phyllis Iva (Cahoon) Marin

Lora, Cindy, Marcia Marin

John’s three sisters: Lora, Marcia and Cindy

John tested in 2016 at the Center of Excellence at UC Davis Medical Center in Sacramento.  He tested anonymously and was negative for the mutated huntingtin gene.  His three sisters didn’t have children and with John negative results, Huntington’s disease is no longer in our family.

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:  https://theresecrutchermarin.com 

 

 

 

 

 

 

 

 

 

 

May is HD Awareness Month

May is Huntington’s Disease Awareness Month

Author Therese Crutcher-Marin

Let’s Kick the Month off with #LetsTalkAbout HD

#LetsTalkAboutHD is a social media initiative during Huntington’s Disease Awareness Month in May to encourage families to share their experiences with HD…It can be a video, a photo or a written story – HD impacts every family differently and it’s time the world knows our story. 

What is Huntington’s Disease?   read more about HD here

HD is a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Parkinson’s and Alzheimers simultaneously.  There is NO CURE and 5% to 10% of all cases are children with Juvenile HD.                

Here’s a little bit about my Huntington’s Disease Journey with my three sisters-in-law, Lora, Marcia and Cindy who have all passed away from Huntington’s Disease complications.

We Can Never Lose HOPE……….

 

 

HD Clinical Trials

Community Statement From Roche Regarding Clinical Trial on Tominersen Drug

Author Therese Crutcher-Marin

Unfortunately, I have to share sad news on the promising clinical trial on the drug Tominersen.

This statement is from Roche/Genentech on March 22, 2021.  From David West, on behalf of the Roche/Genentech HD team Senior Director, Global Patient Partnership

Dear global HD partners,

As part of our ongoing partnership and following your request to receive important and timely updates about Roche’s HD clinical programme, we wanted to share an important update with you. 

We have tough news to share, and we recognise that it will be even more difficult to receive.

Throughout the Phase III GENERATION HD1 study of tominersen in manifest Huntington’s disease (HD), an independent data monitoring committee (iDMC) has been in place. This committee is separate from Roche and Genentech and regularly reviews incoming clinical study data (that Roche and Genentech do not have access to) to review patient safety and assess the balance of potential risk versus potential benefit for study participants. The committee recently met for a pre-planned review of the latest safety and efficacy data from GENERATION HD1 and made a recommendation about the investigational therapy’s potential benefit/risk profile. Based on the committee’s recommendation, we will permanently stop dosing with tominersen and placebo in the GENERATION HD1 study. It is important to note that the recommendation is not based on any new emergent safety concern, but on a broad assessment of the benefit/risk of the treatment arms compared to the placebo arm over time.

Unfortunately, whilst this will raise questions in the community, we do not yet have access to the data from this study. What we can share with you at this time is provided in this letter and in our press release. Please find our press release here.

To read the full press release, visit:  https://hdsa.org/wp-content/uploads/2021/03/Tominersen-programme-update-Community-letter.pdf

or on https://en.hdbuzz.net/

HDSA had a webinar this morning explaining the “why” of stopping the clinical trial.  The recording will be available in a few days

REMEMBER, We Can Never Lose HOPE……

HDSA San Francisco Bay Area AFFILIATE, Huntington's Disease

SAVE THE DATE-Education Day Hosted by UCSF Huntington’s Disease Center of Excellence

TO THE SF BAY AREA HUNTINGTON’S DISEASE COMMUNITY

The HDSA Center of Excellence 

at University of California, San Francisco Medical Center

is Hosting an FREE EDUCATION DAY ON MARCH 17th – 6:00 pm-8:30 pm

                                            Register here:  http://sanfrancisco.hdsa.org/edday

Topics Presented:

  • Update on Clinical Trials-Dr. Cameron Dietiker
  • CRISPR- Bruce Conklin, MD
  • Medications for Huntington’s Disease Patients-Dr. Alexandra Nelson
  • Basic Science-Julia Kaye, PhD/Steve Finkbeiner, PhD of the Finkbeiner Lab

We Can Never Lose HOPE…

 

HD Advocates, Love

Cheers & Blessings, Trey Gray

CELEBRITY DRUMMER ROCKS HUNTINGTON’S DISEASE AWARENESS

NEW HARTFORD, NY – With more than three decades in the music business, renowned drummer, Trey Gray, is beating more than just drums, he is beating the odds. Gray found his passion for music at the tender age of five.  In his early 20s, he relocated from South Bend to Nashville to pursue a professional career as a drummer. He played in local honky-tonks before landing an audition with Faith Hill, which became a huge turning point in  his career.                     

After seven years with Hill, he began to notice changes in his body. In 2003, Gray’s life changed forever when he was diagnosed with a genetic condition known as Huntington’s Disease (HD). What is Huntington’s disease The neurological disorder, characterized by the degeneration of the brain’s nerve cells, deteriorates a person’s cognitive and physical attributes, mimicking symptoms of ALS, Parkinson’s and Alzheimer’s diseases. At the time of his diagnosis 17 years ago,  Gray was given 10 to 15 years to live.

To help with awareness and funds to fight Huntington’s disease, Trey recently started TheTreyGrayFoundation

To read a full article on Trey and watch the newscast video, visit:  Trey Gray-drummer-to-the-stars-diagnosed-with-genetic-disease

 

We Can Never Lose HOPE……

For information on Huntington’s Disease, visit http://hdsa.org