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HD Advocates

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.

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

HD Advocates

Trey Gray An Inspiration

The following Article was written March 2020 before the Pandemic.

Author Therese Crutcher-Marin

“Trey Gray is on tour right now with some of the biggest names in country music. His personal struggles with a debilitating disease are also taking up a lot of his time.

He suffers from Huntington’s Disease . He was diagnosed back in 2003. From the onset of symptoms, the life expectancy of Huntington’s is about 10 to 15 years. It’s been 17 years since Gray started having symptoms. It’s why Gray is enjoying doing what he loves and spreading awareness about his challenges.”
To watch Trey’s video, Beating the Odds of Huntington’s Disease, click here:  https://youtu.be/aJlLD-EvT1Y

Trey has four (4) children who are at risk for the mutated huntingtin gene.  He was instrumental in creating the Huntington’s Disease Foundation  another Huntington’s disease organization raising awareness, supporting families, funding research and finding a cure.

Trey wrote a blurb after reading my book, Watching Their Dance, and it appears on the back cover above Kate Miner’s blurb.  

We Can Never Lose HOPE….

I’m an Huntington’s disease advocate, Chair for the HDSA San Francisco Bay Area Affiliate, author and a blogger.  Visit my  Author/HD Advocate Website

Please donate to the nonprofit, Huntington’sDisease Society of America, and help us eradicate this incurable brain disorder.

 

 

HD Advocates

Huntington’s Disease and Kate Miner

Kate Miner and her family are very involved in the fight against Huntington’s Disease (HD).  Kate, an actress, musician, singer, Huntington’s Disease (HD) advocate, mother and star of the sitcom, ShamelessMore on Tumblr about Kate and Shameless

Her sister, Jenne Coler-Dark is gene positive for Huntington’s Disease and has two children at risk.  She found out HD was in her family in 2014 and has been working to advocate for patients, and raise funds for HDSA ever since.

In 2016, Jenne along with her family hosted the Freeze HD event in Los Angeles.  She continues to participate in the Huntington’s Disease Society of America (HDSA) annual Freeze  HD Event, along with other HD volunteer engagements with HDdenNoMore, and CHDI Foundation  .   Jenne is on the Board of Trustees for the nonprofit, HDSA.

VIRTUAL 6TH ANNUAL FREEZE HD RAISES $200,000 FOR THE HUNTINGTON’S DISEASE SOCIETY OF AMERICA.  Video of Virtual 6th Annual Freeze HD on 9-26-2020youtu.be/RrAXlgDvURo

We Can Never Lose HOPE…………..

I’m a HD advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and the author of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.  amazonWatching-Their-Dance-Marrying-Huntingtons Watching the Dance Huntingtons Disease

Author Therese Crutcher-Marin

HD Advocates

HDSA Pacific Region Throws Down the Gauntlet

Anita Dominguez and Denny Cone, HDSA Pacific Regional Officer and Staff, have thrown down the gauntlet challenging Chapters/Affiliates, in the region, to see who can recruit the highest number of new volunteers in six weeks beginning January 18th, 2021.

The challenge for a Recruitment Blitz may be focused on one specific volunteer need for Teams, Sponsors or Participants or it could be all encompassing to recruit for all areas of Team Hope Walk.  Recruitment for volunteers to work on Committees and to fill board positions are also important to the Chapters/Affiliates. About the Pacific Region

The San Francisco Bay Area Affiliate team members accept the challenge and are busy planning the strategies to win this challenge!  In California, the SF Affiliate extends from Santa Rosa to Gilroy, including the city of San Francisco, Oakland, and San Jose.

If you are interested in volunteering in the Bay Area, please visit https://theresecrutchermarin.com/volunteerism/

The following is a list of the Chapter/Affiliates that will be competing against one another.

  • Arizona Chapter
  • Las Vegas Affiliate
  • Los Angeles Chapter
  • Northern California Chapter
  • Orange County Chapter
  • Rocky Mountain Chapter
  • San Diego Chapter
  • San Francisco Affiliate
  • Southern Idaho Affiliate
  • Utah Chapter
  • Washington State Chapter

We Can Never Lose HOPE….

Author Therese Crutcher-Marin

I’m an Huntington’s disease advocate, Chair for the HDSA San Francisco Bay Area Affiliate, author and a blogger.  Visit my  Author/HD Advocate Website

HD Advocates, HDSA San Francisco Bay Area AFFILIATE

HDSA San Francisco Bay Area Affiliate Celebrates One Year

The San Francisco Bay Area Affiliate, one of the 55 Chapters/Affiliates across the U.S., of the nonprofit, Huntington’s Disease Society of America,  is celebrating its first year of operation.  Despite the pandemic, team members shifted to zoom monthly meetings, virtual events and have developed a Strategic Plan for 2021 to help in the fight against Huntington’s disease, provide Education Days at Stanford & UCSF Center of Excellence, organize outreach projects so HD families can find services to help their family.   

I’m Therese Crutcher-Marin, the Chair for the Affiliate.  Amy Fedele 

HD Advocate Amy Fedele

is co-chair and Cole Holderman is secretary. 

On Saturday, January 11, 2020, the first Affiliate meeting was held at UCSF with 22 attending from Genetech, HOPES, community folks, UCSF & Stanford Centers of Excellence, and HDSA social workers/staff.  

Author Therese Crutcher-Marin, HD Advocate

I want to thank everyone involved in the Affiliate in 2020 for their time and dedication and I’m excited to kickoff 2021 at our first meeting on Wednesday, January 6, 2021.  At this first meeting of the year, we’ll be discussing the strategies to implement the 2021 Strategic Plan to outreach to the HD community in the Bay Area.  

We Can Never Lose HOPE………

Visit my My Author Website and check out my nonfiction  book,  Watching Their Dance.

 

HD Advocates

Kate Miner-An Advocate for Huntington’s Disease

Kate Miner is a champion for Huntington’s disease and an amazing multi-talented woman.

On December 9, 2020, TVOM, an entertainment online magazine, wrote a story about her:

10 Things You Didn’t Know About Kate Miner”

Here’s one of the 10:

8. Huntington’s Disease Runs In Her Family

“No matter how healthy of a lifestyle you try to lead, there will always be things that are out of your control due to genetics. A few years ago, Kate found out that Huntington’s Disease runs in her family. According to the Mayo Clinic, “Huntington’s disease is a rare, inherited disease that causes the progressive breakdown (degeneration) of nerve cells in the brain. Huntington’s disease has a broad impact on a person’s functional abilities and usually results in movement, thinking (cognitive) and psychiatric disorders.” Kate tested negative for the gene that carries the disease, but her sisters tested positive.”    To read the full article on Kate, visit: https://www.tvovermind.com/kate-miner/    

Kate at a HDSA Convention with Michael Miller

Kate is a multi-talented woman; she’s a musician, singer, actress and Huntington’s disease advocate.Kate organizes the HD FREEZE Gala every year in Los Angeles that supports the nonprofit, Huntington’s Disease Society of America.  Her celebrity friends attend and are very generous. In 2020, the event raised over $200,000.00, even with the pandemic raging.  In 2019, HD FREEZE raised  $420,000.00.

2020 HD Freeze             2019 HD FREEZE

We Can Never Lose HOPE………….

HD Advocates

Huntington’s Disease Awareness Month-Drummer Trey Gray


Sixteen (16) years ago, Trey Gray was diagnosed with Huntington’s Disease (HD) and given 10-15 years to live. He feels that his work as a professional drummer has helped him fight the disease. Visit http://hdsa.org for information on HD.  

“I’m definitely beating the odds. And that’s a good thing,” he shares. “I want to be there for people to say, ‘You can do this. You can have an okay life!'”  

There are hero’s in our world and Trey is one that the Huntington’s disease (HD) community embraces with love.  To watch the Trey’s video, “Beating the Odds of Huntington’s Disease”, visit:  Trey’s video

Bio on Trey: Trey Gray was born in Indianapolis, IN, USA as George Lewis Gray, III to his father, George and mother, Cindy. His passion for drums started at the early age of 6 and it was then that he knew his destiny. Gray had his share of rough starts yet always stayed focus on what he loved the most.

We Can Never Lose HOPE……….   

Author Therese Crutcher-Marin

HD Advocates, Love

Huntington’s Disease Advocate Marjorie Guthrie

    

Phyllis Marin

The following is a letter I received from Marjorie, Woody Guthrie’s wife in 1978 when my then fiance, John Marin and his three (3) sisters discovered the family secret; their mother, Phyllis Iva Cahoon Marin, had Huntington’s disease (HD). What is HD?

Marjorie and five other volunteers succeeded in forming the Committee to Combat Huntington’ s Disease(CCHD), which was incorporated in the state of New York on September 18, 1967, as a nonprofit voluntary health agency. To read about Marjorie, go to https://hdsa.org/about-hdsa/hdsa-history/  The CCHD, later evolved into the nonprofit, HDSA, after her death in 1983. http://www.hdsa.org    

___________________________________________________________________________________________________

Dear Therese, 

I wanted to answer your letter to us personally because I really do appreciate your thoughts and the fact that you are not deserting your young man and are looking for ways to HELP!  That is a wonderful attitude….and I am sending you a packet of information about CCHD and the work we are doing.

I hope that after you read all this you might be “inspired” to JOIN WITH US….and perhaps in time….you might event help us build a chapter in your area.  The closest to you is in San Francisco.  But…for now…read…and learn what is going on and when you can…get involved. 

We need FRIENDS!  No one asks the cancer patients to go out and help…and we must realize that most of the HD families who are burdened with the problems of HD can not do all that must be done!  We look for friends, relatives, people who really care and you just might  be one of those!   I will be anxious to hear from you…..Until then….

LOVE & PEACE! In the NEW YEAR!

Signature of Marjorie Guthrie

___________________________________________________________________________________________________

We Can Never Lose HOPE…………

Therese at the 2018 HDSA Annual Convention in LA.

I became an HD Advocate the day I decided to marry John.  I wrote the nonfiction book, WatchingWatching the Dance Huntingtons Disease Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s to help in the fight against HD.

100% of the profits from the book is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA). My author website is:  https://www.theresecrutchermarin.com

 

 

HD Advocates

Trey Gray-A Drummer, Huntington’s Disease Advocate, Father, Philanthropist & an Inspirational Guy

    

Paul Erdman Band

I love to post about Trey Gray because he is such an inspiration, a kind person and, often says, he is GRATEFUL!   He graciously wrote a book jacket comment that appears on the back of my nonfiction book, Watching Their Dance:  Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. 

I asked him not too long ago when he would come out West so the Huntington’s disease (HD) community could meet him and listen to his music.  Unfortunately, it’s not in the cards right now.

Trey’s HD diagnosis came in 2003, and he has beaten the odds because he is asymptomatic after 19 years.  Wow is all I can say!  (Trey’s mom, Cindy, had HD).

What is Huntington’s disease?  https://www.huntingtonsdiseasefoundation.org/life-with-hd-2

Marcia and Cindy, my two sisters-in-law to die from HD complications, struggled with HD for approximately 16-17 years and their quality of life the last five years was not good.

Trey’s son Max.

I hope Trey keeps pounding on those drums, doing what he loves, and keeps us all inspired by his HD advocacy, positiveness, philanthropy work he accomplishes through the Huntington’s Disease Foundation he and two friends started.  https://www.huntingtonsdiseasefoundation.org/

Trey’s Facebook wall is:  https://www.facebook.com/trey.gray

We Can Never Lose HOPE….

 

Watching Their Dance can be found on Amazon around the world & many other book websites. It’s available as an e-book also.   100% of the profits are being donated to Huntington’s Disease Society of America (HDSA).  I’ve donated over $14,000.00 so far from the book to HDSA.

Read a book review from Kirkus:  https://www.kirkusreviews.com/book-reviews/unknown/watching-their-dance/