Love

A Healing Exercise

Author Therese Crutcher-Marin, HD Advocate

Good morning,

I’m Therese Crutcher-Marin, Huntington’s Disease Advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author.

Since I published, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, many people have asked me “Why did you decide to write a book?”  My reply was, “The motive was purely selfish as I was searching for a way to heal from the loss of my three sisters-in-law to the cruelest disease on the planet; Huntington’s disease” (HD).  As I wrote my story, I came to realize that my story would heighten HD awareness, honor my three sisters-in-law and generate dollars to donate to the nonprofit, Huntington’s Disease Society of America to help in the fight against HD.

Articles:  The Healing Power of Telling Your Story

&   Writing About Emotions May Ease Stress and Trauma  

In 2008, Cindy, my third sister-in-law passed away from HD and in 2010, I began writing my story.  A counselor I’d seen for years suggested I write my story as a way to heal.

Seven (7) years later, in 2017, I held a book in my hands and could honestly say, “the process of writing my story, validated what I had gone through, and allowed me to move the grief I harbored to the pages of the book; so, yes, I have healed.”

We Can Never Lose HOPE……

 

 

 

 

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…

 

 

 

 

 

 

HD Clinical Trials

Wave Life Sciences Announces Initiation of Dosing in Phase 1b/2a SELECT-HD Clinical Trial of WVE-003 in Huntington’s Disease

Author Therese Crutcher-Marin

WAVE Life Sciences gives the Huntington’s Disease community around the world another reason to  embrace HOPE.  Read the press release from WAVE Life Sciences,“Only clinical-stage candidate for Huntington’s disease designed to selectively lower mutant HTT and spare wild-type HTT

Adaptive trial design to enable faster optimization of dosing and decision-making on next steps for WVE-003; data to be generated through 2022

WVE-003 preclinical data and SELECT-HD trial to be highlighted at EHDN 2021 Remote Meeting September 9-11, 2021″

“Wave Life Sciences Ltd. (Nasdaq: WVE), a clinical-stage genetic medicines company committed to delivering life-changing treatments for people battling devastating diseases, today announced the initiation of dosing in the company’s Phase 1b/2a SELECT-HD clinical trial evaluating investigational WVE-003 as a treatment for Huntington’s disease (HD). WVE-003 is a stereopure antisense oligonucleotide designed to target SNP3, a single nucleotide polymorphism on the mutant huntingtin (mHTT) allele, thereby selectively lowering mHTT protein and sparing healthy, wild-type huntingtin (wtHTT) protein.”

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.

 

 

Fundraising

Online Silent Auction Raises Funds for Huntington’s Disease (2)

Here are four (4) more Online Silent Auction items to bid on to help in the fight against Huntington’s disease (HD). Hosted by San Francisco Bay Area Affiliate.

Link to  the Silent Auction:

HD is a rare, fatal, genetic brain disorder that has the symptoms of ALS, Parkinson’s and Alzheimers at the same time.  There is NO CURE and as far as I’m concerned, it’s the cruelest disease on the planet.

Peachy Canyon Winery in Templeton CA-Bottle of Zinfandel & Tasting for 2, Value $100 Starting Bid $60 Minimum Bid $10

                                3 bottles of Macadamia Nut Honey Wine Volcano Winery from Hawaii, Value $60 Starting Bid $40 Minimum Bid $5.00

RockTape H2O-4 rolls-Value $100 Starting Bid $60 Minimum Bid $10

      Hafner-Sonoma County-Bottle of 2010 Cabernet Sauvignon-Value $40 Starting Bid $25 Minimum Bid $5.00

We Can Never Lose HOPE….. 

 

 

HDSA Fundraising events

Online Silent Auction Raises Funds for Huntington’s Disease (1)

The HDSA San Francisco Bay Area Affiliate is hosting an Online SILENT AUCTION from September 18th through October 7th.  There are over 60 items to view. To view items, click here:  https://app.donorview.com/nbX6Z

Funds raised support two HDSA Centers of Excellence at Stanford and UCSF Medical Center, three (3) local Huntington’s Disease (HD) support groups and many free online resources for local HD families.

Items you’ll see online:

Clif Family Vineyard-Napa Gift Certificate for 4 guests for a Seasonal Wine Tasting Experience

Value $150 Starting Bid $90 Minimum Bid $25

             The Table Restaurant in Willow Glen-$100 Gift Certificate Starting Bid $60 Minimum Bid $10

Earrings by Julie Tuton Jewelry-Value $130 Starting Bid $80 Minimum Bid $10

                    Gift Certificate at Quail Lodge & Golf Club for Golf for Four inclusive of Two Golf Carts, Carmel-Value $780 Starting Bid $450 Minimum Bid $50

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.

 

Family

Circle of Life

Author Therese Crutcher-Marin, HD Advocate

The Circle of Life has never been more present in my family’s life than it is at this time.

One definition of the Circle of Life  is “Nature’s way of taking and giving back life to earth. It symbolizes the universe being sacred and divine. It represents the infinite nature of energy, meaning if something dies it gives new life to another.”

My father and me in 2018

     

I have come to see my father’s end as a new beginning because as my 91-year old father left this world, two children were born into my family;  Marlena, our first grandchild, and a great grandson, Hayden, to my sister Ellen.
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 and learn about HD:  https://theresecrutchermarin.com
Grief, Love

Prolonged Grief Disorder

My father and me in 2018

During the pandemic, my sisters and I lost our father.  Because we live in an unprecedented time, holding an in-person Celebration of Life for him was difficult to plan.

Experiencing this loss has lead me to explore grief once again.  I have written several blogs, in the past on grief and the many kinds of grief that people can experience.

Each individual loss is unique and so is the type of grief they will struggle with; normal, anticipatory, complicated, chronic, delayed, distorted, cumulative, prolonged, exaggerated, and nine (9) others.  Please see article on types of grief. 

After reading the above article, prolonged grief disorder, has become apparent to me that my father had been suffering from this type of grief.  My mother died in 2006 after a sudden diagnoses of brain cancer that metastasized from her lungs.  (she never smoked a day in her life)

After that loss, my father was never the same.  Some would say, after 54 years of marriage, the other half of him was taken and he would never feel whole again.  My father’s symptoms of this kind of grief was that he could never enjoy himself, he felt guilty that he was still here and she wasn’t. He grieved silently and grief incapacitated him from going places, reaching out to people.  My sisters and I always felt he was deeply depressed.

So, my plea to you is to be kind and gentle to people who have experienced a recent loss or a loss of many years.  Everyone grieves differently and there is no time time frame on grief and remember, if you love, you will grieve.

 

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.

 

 

 

 

 

Huntington's Disease

Update on Trey Gray-Huntington’s Disease Advocate

Trey, in the middle, with friends

Here’s what Trey Gray has been up to these days.  Trey is a philanthropist, musician, father, Huntington’s disease advocate and a man living with Huntington’s disease for over 18 years.

Huntington’s disease couldn’t stop Trey, and he found that drumming helped contribute to his longevity. “Any type of oxygen you get into your brain is good, and moving helps,” says Gray. “With drumming I’m doing four limbs sometimes at a time; imagine that in your brain, the neurons that are firing, it’s just fantastic.” Since his diagnosis, Gray has continued playing, in the studio and on tour, with country superstars Faith Hill, Jewel, Brooks & Dunn, and Reba McEntire.

Trey has been the drummer on Brooks & Dunn band for many years and is on the road again performing.
Indianapolis, St. Louis, and Cincinnati! You’re up first! See y’all this weekend to kick off the #RebootTour!
Trey also has a treygrayfoundation
You’ll see this post on his FB page just about everyday.   https://www.facebook.com/trey.gray.564
We Can Never Lose HOPE…….
HD Clinical Trials

Prilenia Gives Huntington’s Disease Community HOPE

Author Therese Crutcher-Marin, HD Advocate

To the Huntington’s Disease community around the world; Do not lose HOPE. 

A couple of weeks ago, I had the pleasure to talk with Henk Schuring Chief Regulatory & Commercialization Officer about Prilenia; a clinical stage biotech company, led by Michael Hayden, MD, PhD., together with a highly experienced team with a track record of success.  Michael is a world-renowned scientist in Huntington Disease research.

Henk found my Huntington’s disease (HD) Advocacy & Author website and emailed me.

It’s a very exciting time since Prilenia is in Phase 3 of a clinical trial on the drug, Pridopidine, an oral drug currently in development for the treatment of Huntington’s disease and ALS. It is administered in a small easy-to-swallow capsule twice a day.

Prilenia participated in 2021 HDSA Convention. They were in the Exhibit Hall last June.

https://hdsa.org/hdsa-virtual-exhibit-hall/prilenia/

 

 

We Can Never Lose HOPE…