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HD Awareness, HDSA Fundraising events

KSRO Talks with Therese Crutcher-Marin About Huntington’s Disease

Listen to the in-depth talk I had with Michelle Marques, host of Sonoma County Focus on radio station KSRO in San Francisco North Bay. 

Click here to listen to the interview:  https://www.ksro.com/episode/sonoma-county-focus-fundraiser-for-huntingtons-disease-society-of-america/

Heightening awareness of Huntington’s Disease is important so I was grateful to have twenty minutes to talk about the disease.  I also shared information regarding the HDSA San Francisco Bay Area Affiliate upcoming Virtual Trivia Night with Sonoma County Beer fundraiser on April 25, 2021.

Enjoy a night of Trivia while sipping on HenHouse, Bear Republic & Lagunitas beer!

Sunday, April 25, 2021 5:00 pm – 8:00 pm

Open to San Francisco North Bay residents/or anyone who can pick up their beer in Petaluma.

Must be 21 or older to participate.

$40 donation per person; each person will receive a total of 4 beers, a combination of HenHouse, Bear Republic & Lagunitas.  (while supplies last)

Form a trivia team (any number of people can be a team), enjoy local brews, and compete for a case of beer (24 – 16 oz cans) from one of the 3 beers.

Register Here:  https://sanfrancisco.hdsa.org/trivianight

 

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 

 

Helping Others, Volunteers

April is National Volunteer Month

April is National Volunteer Month, when we celebrate the work that volunteers do year-round. April 10-16 is National Volunteer Week; organizations across the country will recognize their volunteers for helping them achieve their mission.

The mission of Huntington’s Disease Society of America (HDSA) is, “Dedicated to improving the lives of everyone affected by Huntington’s Disease (HD) and their families“.

It takes many hands to continuously fulfill HDSA’s mission and as Chair for HDSA San Francisco Bay Area Affiliate, I’m honored to work by the side of many dedicated volunteers, in the San Francisco Bay Area, who work tirelessly in the fight against Huntington’s disease.

Huntington’s Disease, the cruelest disease on the planet, has NO CURE and affects families for generations.  Because it is genetic, when a child has a parent with the disease, they are “at risk” and have a 50/50 chance of inheriting the mutated huntingin gene that causes the disease. What is Huntington’s disease

We Can Never Lose HOPE….

Author Therese Crutcher-Marin

I’m a HD advocate, Chair for HDSA San Francisco Bay Area Affiliate, an author and a blogger.

 

Visit my website at:  https://theresecrutchermarin.com

 

 

 

 

 

 

 

 

HDSA Fundraising events

Thank you to Lagunitas, HenHouse and Bear Republic Breweries

Author Therese Crutcher-Marin, HD Advocate

I want to thank HenHouse, Lagunitas and Bear Republic Breweries in Sonoma County CA for donating 10 cases each to  the nonprofit, Huntington’s Disease Society of America (HDSA) for our upcoming Virtual Trivia Night with Local Beer.

 

 

Huntington’s Disease Society of America‘s (HDSA) mission is to improve the lives of everyone affected by Huntington’s disease and their families.  Since there is NO CURE, HDSA strives to have local resources available to Huntington’s disease families; i.e., two (2) HD clinics, one at Stanford and one at UCSF Medical Center; three (3) monthly HD support groups in Palo Alto, Mill Valley and El Cerrito, two (2) Education Days and many online resources.  HDSA also offers Fellowships to young scientists.

Grief, HD Advocates

Channel Your Grief Into Action

Author Therese Crutcher-Marin, HD Advocate

I was blessed to have worked the last 10 years of my career in a local hospice program that allowed me to truly help my neighbors. Grief, of course, was an emotion our patients experienced and part of our mission was to provide comfort to the bereaved.         

The Huntington’s disease community, unfortunately, is suffering from three types of grief: anticipatory grief, pandemic grief and grief from two promising clinical trials that were halted.

Genetech roche-drops-huntingtons-disease-trial-with-once-promising-drug-tominersen/and

Wave Life Sciences    news-release-provides-update-phase-1b2a-precision-hd.

So, let’s Channel our grief into Action! We are HD STRONG!

Each one of us can  CHANNEL our GRIEF into ACTION.  The following are suggestions of ways to get involved with the nonprofit, Huntington’s Disease Society of America (HDSA):

  1. HD Research Trial Finder
  2. The HD Parity Act Caucus
  3.  Get Involved with a HDSA Chapter/Affiliates
  4. Get Involved with HDSA NYA

There are other Huntington’s disease organizations you can be involved with:

Help 4 HD-.Help 4 hd

Huntingtons Disease Foundation

We Can Never Lose HOPE………….

I’m a HD advocate, Chair for HDSA San Francisco Bay Area Affiliate, an author and a blogger.

Watching the Dance Huntingtons Disease

Visit my website at:  https://theresecrutchermarin.com

100% of the proceeds from my book, is donated to the nonprofit, HDSA.

Grief

Huntington’s Disease Community Lives With Three Layers of Grief

Author Therese Crutcher-Marin, HD Advocate

Working the last ten years of my healthcare in Hospice, I saw how strong of an emotion grief is after losing a loved one.

I married into an Huntington’s Disease family (HD) and while I worked in Hospice, I had first hand experience with Anticipatory Grief when caring for hospice patients and in my personal life.  There are many HD families who have for years cared for a loved one, and who live with anticipatory grief because the HD prognosis is 10-20 years.   What is Huntington’s Disease

So what is Anticipatory Grief?    When a person or family is expecting death, it is normal to begin to anticipate how one will react and cope when that person actually dies.

How to deal with Anticipatory Grief

Over the past year, Huntington’s Disease families have been shrouded in three (3) types of grief: anticipatory grief, pandemic grief and grieving the  halting of the tominersen clinical trial and WAVE PRECISION-HD trials that do not support further development of WVE-120102 and WVE-120101.  These drugs held great promise to stop the progression of this cruel disease.

My plea to HD families is to reach out and not isolate yourself.  HDSA has online support groups and many online resources to help your family.     HDSA Locate Resources          

HDSA Support Group Center:  HDSA supportgroupscentral.com/groups

We Can Never Lose HOPE….

I’m a HD advocate, Chair for HDSA San Francisco Bay Area Affiliate, an author and a blogger.

Watching the Dance Huntingtons Disease

Visit my website at:  https://theresecrutchermarin.com

100% of the proceeds from my book, is donated to the nonprofit, HDSA.

Fundraising

Virtual Trivia Night with Local Beer from Sonoma County

The HDSA San FranciscoBay Area Affiliate  is hosting a local fundraiser in Sonoma County with local beer companies from Petaluma, HenHouse, Lagunitas, and Bear Republic.

It’s a unique event because participants will pick up their beer in Petaluma, form teams and play a virtual game of trivia at their home.  Here’s the details:

Enjoy a night of Trivia while sipping on Local Brewing Company beer!

Sunday, April 25, 2021 5:00 pm – 8:00 pm

Open to San Francisco North Bay residents (Sonoma County).

Must be 21 or older to participate.

$40 per person, each person will receive 4 beers compliments of HenHouse, Lagunitas and Bear Republic.  (while supplies last)

Form a trivia team (any number of people can be a team), enjoy local brews, and compete for a case of beer (24 – 16 oz cans) from HenHouse, Lagunitas or Bear Republic Brewing Companies in Petaluma and Rohnert Park  

Please pick up your beer at 15 Cleveland Lane, Petaluma on Saturday April 24 from 10:00 am to 6:00 pm, and Sunday April 25 from 10:00 am to 3:00 pm.

Call Vanessa Garrett at 530 906-3950 to arrange pick up.

Call Therese Crutcher-Marin at 530 906-8415 to arrange delivery. Delivery only by prearranged circumstances.

To signup, visit:  https://sanfrancisco.hdsa.org/trivianight

Author Therese Crutcher-Marin

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

We Can Never Lose Hope…

Grief, HD Clinical Trials

Unfortunate News Regarding Two Clinical Trials Halted on Huntington’s Disease Drugs

Author Therese Crutcher-Marin

Dear Huntington’s Disease Community.                             

It’s been a very sad week for the Huntington’s disease community around the world with the halting the clinical trial on the Roche/Genentech drug tominersen.  To read the press release, click here:  https://hdsa.org/wp-content/uploads/2021/03/Tominersen-programme-update-Community-letter.pdf

Then yesterday, March 29, 2021, WAVE Life Science announced the decision to discontinue development of WVE-120102.   To read the press release, click here:  https://hdsa.org/wp-content/uploads/2021/03/HD-community-letter_PRECISION-results-final.pdf

 

As we grieve the loss of these once promising drugs, we must stay strong.  Remember, the HD community is

                   #HDSTRONG

                                                                                            and

    WE CAN NEVER LOSE HOPE……

I’m a HD advocate, Chair for the HDSA San FranciscoBay Area Affiliate , a writer and a blogger.

Visit my website at https://theresecrutchermarin.com

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……

Hospice, Love

My Journey’s End

Author Therese Crutcher-Marin

“My Journey’s End is a place to which someone or something is going or being sent.”

Throughout my life I’ve had several My Journey’s End;  the first was during college when the Marin siblings discovered they were at risk for Huntington’s Disease and I walked away from John because I was scared. After an epiphany, I was sent to John, the love of my life and my Journey’s End for love ended.

Another My Journey’s End occurred during my career in healthcare.  In 1991, our children were young and I was working part time managing the Lifeline program at our local hospital in Auburn.  I was looking for another part time position to become full time; my anxiety would lessen when I was working full time.  One day I ran into the Hospice Director and she asked me to consider the Hospice Support Services Manager position, a part time position. We had just moved Marcia, my sister-in-law with HD, to our town and I was managing her care.  I believe I was sent to Hospice, destined, to work and learn from the dying.  I see this as My Journey’s End as far as my career and was blessed to work in Hospice for the last ten years of my healthcare career.

Three years prior, Lora, John’s oldest sister, had died from bad fall and Cindy was showing symptoms of Huntington’s disease.  Both Marcia and Cindy were on my hospice program and died peacefully at a Residential Care Facility in Auburn.

We Can Never Lose HOPE……….

I’m a Huntington’s disease advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a writer and blogger.  My website is: https://theresecrutchermarin.com

HD Awareness

Enroll-HD-A Resource for Everyone

Author Therese Crutcher-Marin

My family has been greatly affected by Huntington’s Disease (HD), and after my third sister-in-law, Cindy, died from HD complications, I searched for ways to help in the fight against the cruelest disease on the planet.  What is HD?

One way to contribute is through Enroll-HD.   Enroll-HD is a worldwide observational study of Huntington’s disease (HD), meaning that it doesn’t involve taking a drug but tracks peoples’ health and behavior over time. There are more than 20,000 participants globally, who visit hundreds of sites and all undergo the exact same evaluations yearly. Anyone from an Huntington’s Disease family can participate, regardless of gene status or risk. It is a resource for the entire HD community, including patients, families, patient advocates, clinicians and other healthcare professionals, researchers, and anyone else who has a connection to HD.

The study is enabling scientists to identify new drug targets, helping pharmaceutical companies to recruit participants quickly and efficiently for their trials, and moving the field towards an improved understanding of HD and quality care.

Learn more by visiting www.enroll-hd.org 

HD-Enroll knows that privacy is of the utmost concern to families with HD. Please review HD-Enroll’s privacy policy: https://enroll-hd.org/privacy/

We Can Never Lose HOPE………

Author Therese Crutcher-Marin

I’m a Huntington’s disease advocate and Chair for the Huntington’s Disease Society of America (HDSA) San Francisco Bay Area Affiliate.  Please visit my website at https://theresecrutchermarin.com