The Marin Siblings

Honoring Three Women Struck Down by Huntington’s Disease

Lora, Cindy and Marcia Marin

Lora, Cindy, Marcia Marin

Lora, Marcia and Cindy Marin, my three (3) sisters-in-law, who died from Huntington’s disease (HD) complications, are never far from my thoughts.

I’m a HD advocate for many reasons and first and foremost it is because I want to honor these three (3) beautiful women whom I loved.  John, my husband, and I miss them everyday and wish we all could have grown old together and celebrated many more Christmas’s, Thanksgiving’s and birthday’s.

HDSA 2019 Convention

Huntington’s disease, a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Parkinson’s, and Alzheimers at the same time.  This disease has no cure and devastates families for generations.  It’s an insidious disease because when a parent has the disease, every child has a 50/50 chance of inheriting the mutated HD gene that causes the disease.  More about Huntington’s disease

I’m a volunteer for Huntington’s Disease Society of America (HDSA), a nonprofit dedicated to improving the lives of HD families.  I’m currently the Chair for the HDSA San Francisco Bay Area Affiliate and I work with a fabulous team of HD advocates to heighten HD awareness and raise money to fund local services like HD support groups, the Centers of Excellence at Stanford University and University of California, San Francisco, HD Education Days and research.  http://hdsa.org

https://sanfrancisco.hdsa.org/

Being involved has given me peace and soothed my soul by doing this important work in memory of Lora, Marcia and Cindy.

Benefits to volunteering:  https://nonprofithub.org/featured/8-long-term-health-benefits-of-volunteering/

We Can Never Lose HOPE………………………..

 

About Author

“Watching Their Dance” Took 2nd Place on TaleFlick.com

Thank you to everyone who voted last week for Watching Their Dance, a memoir and a love story, to have a shot at being made into a MOVIE. It was the 1st round of competition.

I subscribe to a website, TaleFlick http://TaleFlick.com  created by Hollywood producers, where my book is looked at by those who Make MOVIES.

The book came in 2nd place which is not too disappointing to me. It was out of 40 books. I was happy to be selected for the contest & it gave awareness to Huntington’s disease.

The book can be purchased here on my website, a hard book or an epub file. Shipping is free  https://theresecrutchermarin.com/purchase-book/

It’s also available on Amazon around the world.  amazon.com/Watching-Their-Dance-Marrying-Huntingtons   Amazon.com/author/theresecrutchermarin

It can be found on many other book websites, like B&N, and available in Kindle, Nook, Kobo, ibooks. .barnesandnoble.com/w/watching-their-dance-therese-marie-crutcher-marin/1126082854

Author Therese Crutcher-Marin

100% of the profits from Watching Their Dance is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA).  To date, I’ve donated $15,000.00 to HDSA, the profits since I published.

Please read the wonderful Reviews I received on the book.  Every author hopes to receive the positive reviews by trusted organizations; KIRKUS Reviews, Goodreads, Book Life:  https://theresecrutchermarin.com/goodreads-review/

We Can Never Lose HOPE…

 

 

A Love Story

Make “Watching Their Dance” Memoir into a MOVIE

My book, Watching Their Dance, a love story while living in the shadow of Huntington’s Disease,  is in a strong 2nd place in a contest on TaleFlick.com that allows the public to vote on which stories they want to see adapted to the screen.
 
Please VOTE Click here to vote!!
A movie would give Huntington’s disease (HD)  so much exposure.  HD is a rare, fatal, genetic brain disease that has all the symptoms of ALS, Parkinson’s and Alzheimers at the same time.  There is adult HD and Juvenile HD and there is NO CURE.  For more info on HD, visit http://hdsa.org
TaleFlick.com is holding a contest that allows the public to vote on which stories they want to see adapted to the screen.
HD Awareness

Turn Your Book into a Movie Voting Continues 22 More Hours

The contest continues!  You have another 22 hours to vote for Watching Their Dance.

TaleFlick.com hosts a contest that allows the public to vote on which stories they want to see adapted to the screen.   

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is one (1) in 40 books competing.

Please VOTE for my book.  It will give Huntington’s Disease great exposure, if I win. For information on Huntington’s disease, please visit http://hdsa.org

VOTE HERE:  https://taleflick.com/pages/discovery?app_data=entry_id%3D241154115%26referer_override%3Dhttps%253A%252F%252Fwww.facebook.com%252F&fbclid=IwAR3XP2nEDEXt1aEoWXUXsXoKhW5vtLKpmohFoUJ7Sp2hDnB3kX8AWdiQsOs

HDSA 2019 Convention

Therese at the 2018 HDSA Annual Convention in LA.

 

 

 

A Love Story

To The One I Love John Anthony Marin

John & our children & their spouses

Valentine’s Day is upon us and I have had 44 years to celebrate this day with him.  I’m thankful for John Anthony Marin, the love of my life, my husband, lover, father of my children, confidant, touchstone and the kindest, most honest man I’ve ever known.

In 1979, I decided to marry John, even with his unknown gene status, because I couldn’t fathom life without him.   I embraced the uncertainty which enriched my life and fortified my marriage.

Each year, Valentine’s Day validated the love John and I shared.  I secretly rejoiced in enjoying another year with John with no Huntington’s disease symptoms.  Read about our love story:  https://theresecrutchermarin.com/my-story/

This day also reminded me to stay vigilant, living mindfully, not sweating the small stuff, never taking John for granted and the wonderful life we had together.

I have never regretted marrying John, even with the heartache we have experienced with the loss of his three (3) sisters to Huntington’s disease. We are blessed that John tested negative in 2016 for the Huntington’s disease mutated gene.

Take a look of the history of Valentine’s Day and enjoy the day with the one you love.  https://www.history.com/topics/valentines-day/history-of-valentines-day-2

           

 

 

A Love Story

VOTE on TaleFlick.com for “Watching Their Dance” to be Made into a MOVIE

Watching Their Dance, a love story, was submitted to TaleFlick, a website I subscribe to where my book can be seen by movie producers in Hollywood. 

My book has been submitted, with many other books, in a contest and the public can vote on which story they would like to see made into a movie.

TO VOTE: Please visit http://TaleFlick.com.  Click on TaleFlick Discovery and scroll down and you’ll see my book.

If chosen, we could make millions for Huntington’s disease research.

As of this morning, Watching Their Dance is in #4 position.

This is the first round of voting so please share share and share so your family and friends can vote.

Thank you

HD Awareness

Vote for “Watching Their Dance” To be Made into a MOVIE

I submitted my book, Watching Their Dance to TaleFlick, a website I subscribe to where my book can be seen by movie producers in Hollywood.

My book has been submitted, with many other books, in a contest and the public can vote on which story they would like to see made into a movie.

TO VOTE: Please visit http://TaleFlick.com.  Click on TaleFlick Discovery and scroll down and you’ll see my book.

If chosen, we could make millions for Huntington’s disease research.

As of this morning, Watching Their Dance is in #4 position.

This is the first round of voting so please share share and share so your family and friends can vote.

Thank you!

HDSA San Francisco Bay Area AFFILIATE

The Story Behind the HDSA San Francisco Bay Area Affiliate

The volunteers for the new San Francisco Bay Area Affiliate

The Huntington’s Disease Society of America (HDSA) has announced the formation of the new Bay Area Affiliate in HDSA’s Pacific Region. In California, HDSA’s Bay Area Affiliate extends from Santa Rosa to Gilroy counties, including the cities of San Francisco, Oakland, and San Jose.What is Huntington’s disease?

The Bay Area affiliate is one of ten chapters/affiliates in HDSA’s Pacific Region.

“Congratulations to the Bay Area volunteers who have tirelessly advocated to create this new Affiliate so they can bring more education, services and support to their community,” said Louise Vetter, HDSA’s President & CEO. “The addition of a new HDSA Affiliates and Chapters is critical to expanding the community-based support that HD families provide to one another.” 

In 2014, the seeds were planted for this Affiliate. At the time, Natalie Carpenter was HDSA’s Pacific Southwest Regional Development Director and she was coordinating the San Francisco Team Hope Walk. The Team Hope Walk program is HDSA’s largest national grassroots fundraising event. Thousands of families, friends, co-workers, neighbors and communities nationwide walk together each year to support HDSA’s fight to improve the lives of people affected by HD and their families.

One of the people that registered for the San Francisco Team Hope event was Amy Fedele. Natalie was immediately moved by Amy’s story and passion to support the HD community.

“I read her compelling story about her mom’s fight with the disease and her gene positive diagnosis and I couldn’t stop thinking about her strength and courage,” said Natalie. “I contacted her immediately and asked her if she was willing to share her story and if she wanted to get involved with the HDSA as a volunteer and advocacy advocate.”

Amy was diagnosed with the gene that causes Huntington’s disease (HD). 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 usually during their prime working years and has no cure.

“I volunteer my time to raise awareness and raise money to offer additional resources,” Amy explains. “I support families affected my HD, like my own, so they never feel alone in their fight against HD.”

Amy’s mother also tested positive for HD, as well as her uncle and her aunt who passed away due to complications from HD. Amy is her mother’s caregiver and, luckily, Amy’s brother tested negative for the gene that causes HD.

In 2015, Amy became HDSA’s San Francisco Team Hope Walk honoree.

HD Advocate Amy Fedele

“Since then Amy has chaired the Team Hope Walk and helped with any HDSA Bay Area event,” Natalie explains.

In 2016, Amy wanted to form more events in the Bay Area, so she went out to build more relationships and find new supporters to join the fight against HD.

“We spoke frequently about the goal of creating an affiliate once we found the right committee and support system in place,” said Natalie.

However, in March of 2017, Amy would have another battle to face: stage two triple positive breast cancer. She needed multiple surgeries and went through chemotherapy. According to Amy, this made her stronger and fight harder.

In that same year, Amy was awarded HDSA’s National Person of the Year. She was also awarded the San Francisco 49ers Community Quarterback award for her community volunteer work with HDSA. Since then, the 49ers have been involved with the San Francisco Team Hope Walk.

Finally, in 2018, Amy was cancer-free. “Amy is a force of nature and I feel truly blessed to have met her and I am very honored to call her my friend,” said Natalie.

As Natalie was transitioning into a new role on HDSA’s National Development Team, Amy had another ally in making the HDSA

Author Therese Crutcher-Marin

Bay Area Affiliate a reality: Therese Crutcher-Marin.

Therese married into a HD family and witnessed the symptoms firsthand. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. Symptoms include personality changes, mood swings, depression, impaired judgement, involuntary movements, slurred speech, difficulty in swallowing, and significant weight loss.

She would later become a hospice professional and caregiver. She wrote a non-fiction book called Watching Their Dance: Three Sisters, a Genetic Disease and Marrying Into a Family At Risk for Huntington’s. For information about the book, click here. She donated all the profits from the book to HDSA. Since 2017, more than $14,000 has been donated to HDSA.

“When a challenge presented itself to Amy and me, we embraced it,” said Therese.

In 2018, Amy joined Therese on HDSA’s Northern California Chapter board to learn more about HDSA’s local governance and programs. By the end of 2018, she had learned a lot with the Chapter and was ready to start an Affiliate specifically for the Bay Area.

In that same year, Natalie, now Assistant Director of Donor Services with HDSA, held an HDSA “Great Gatsby” event in Sonoma, California. At the event, Amy met Vic and Kim Aul. Both expressed interest in joining the potential Affiliate.

Amy and Therese also have working relationships with University of California, San Francisco and Stanford University. Both are a part of HDSA’s Centers of Excellence Program that provide an elite team approach to HD care and research. Professionals at these Centers have extensive experience working with families affected by HD and work together to provide families the best HD care program. Amy and her mother are patients at the University of California, San Francisco.

With the assistance of Denny Cone, HDSA’s Pacific Regional Development Manager, the application process for HDSA’s Bay Area Affiliate began and was accepted a year later. The Board includes thirteen members. Therese will be the Chair of the Affiliate and Amy will be the Co-Chair. To see the full list of members, click here.

“As Chair of the Affiliate, my goals are to promote services available to HD families, generate dollars to increase services, heighten HD awareness and guide families into the HD community so no one has to ever feel alone,” Therese explains.

In this coming year, Amy and Therese are looking forward to building a presence in the Bay Area community. The Affiliate is looking to HDSA’s National Youth Alliance (NYA) to assist with reaching new families and have a NYA member on the board.

Established nearly twenty years ago, the HDSA NYA is HDSA’s nationwide youth program providing support, services and community to children, teens, and young adults affected by HD. With regional retreats, youth social workers and an annual event at the HDSA National Convention, the NYA is the most experienced youth support program for the HD community.

“I want the NYA to be the voice of the youth in the Bay Area and talk to people their age,” said Amy. “I want them to be a big part of the Bay Area Affiliate, because our youth is the future.”

The future is bright for the HDSA Bay Area Affiliate. As Amy explains, “We have had successful events and want to bring more support in the Bay Area. My goal is to get more sponsors in the area and have one big event. The only way we can accomplish this is if we can do this together.”

We Can Never Lose HOPE………………..

Fundraising

“A Heart 4 Huntington’s” Beer Fundraiser

If you live in the San Francisco Bay Area, come to Lagunitas Brewing Company in Petaluma on February 3rd and help in the fight against Huntington’s disease.  Lagunitas Brewing Company Address:  1280 N. McDowell Blvd.  https://lagunitas.com/taproom/petaluma

A $20 entry fee, that includes a beverage, will get you in and you can wind down from your Monday while listening and/or dancing to the popular Sonoma County band, Poyntlyss Sistars Rockin’ Show Band

To purchase tickets, visit:  https://pacificreg.hdsa.org/heartforhd

A food truck will be on site.  For $20, you can get an all you can eat taco dinner.

This is a fundraiser for the nonprofit, Huntington’s Disease Society of America.

Fundraising

HDSA’s NYC Marathon Team Raises More than $133,000

Every year, Huntington’s Disease Society of America forms a team to run in the NYC Marathon as a fundraising event. The event is usually around the first of November.  The pictures above are from the November 6, 2019 Marathon. 

Our daughter, Vanessa, and daughter-in-law, Fran, ran in the 2016 NYC Marathon.  Our family traveled to NYC to cheer them on.  It was an incredible experience, so festive, fun and positive.  Vanessa and Fran were ecstatic because they cut 10 minutes off their marathon time.  Thousands of people cheered them on through the boroughs of New York.

It’s a great fundraiser for HDSA and creates awareness at the same time.  To read more about the HDSA Team, visit:  https://hdsa.org/news/hdsas-new-york-city-marathon-team-raises-more-than-133000-to-support-the-fight-against-hd/

   

The pictures above are of Vanessa and Fran running in the 2016 NYC Marathon for Huntington’s disease.

We Can Never Lose HOPE……