HDSA Fundraising events

Hounds 4 Huntington’s Costume Dog Walk

It’s Halloween time so dress up your dog, your kids and yourself and help in the fight against Huntington’s disease (HD) by participating in the fundraising event, on October 26, 2019 for the nonprofit, Huntington’s Disease Society of America (HDSA), at Shollenberger Park in Petaluma, California. Shollenberger Park

To register your pooch, go to:https://app.donorview.com/QV7R                             

$25 for first dog & $10 for each additional dog.   

Humans are FREE!   

Huntington’s disease (HD) is a rare, fatal, genetic brain disorder that is like having all the symptoms of ALS, Parkinson’s and Alzheimers at the same time.  There is NO CURE.  Learn more about Huntington’s Disease here

There will be contests to enter your dog in; i.e. best costume (dog), biggest dog, smallest dog, shaggiest dog, best behaved dog and a Chinese raffle with lots of wine prizes.

The park trail is a flat 2-mile loop that takes you along the Petaluma River and is wheelchair accessible.

We Can Never Lose HOPE…………..

Author Therese Crutcher-Marin

I’m a Huntington’s disease advocate having lost my three (3) sisters-in-law to the disease.  To read my HD journey, an inspirational Love story while living in the shadow of HD, see my author website https://www.theresecrutchermarin.com

 

 

HDSA Fundraising events

The San Francisco Team Hope Walk Results Are In

The San Francisco Team Hope Walk last Saturday, October 5th, was a huge success, raising over $50,000.00 with 300 participants.

Saturday was a beautiful, clear day and the walk on Chrissy Field offered a gorgeous view of the San Francisco Golden Gate Bridge.  It was an awesome sight.

Team Hope Walk’s are HDSA fundraisers but it also serve other purposes.  HD families gather as a community to support one another, to share stories and not feel forlorn and isolated.  They know they are with their people; folks who are living the same life as they are.  What is Huntington’s Disease?

By participating, they don’t feel alone and are happy they can do something to help HDSA move forward in research and providing services to HD patients and their families; i.e. HD support groups, Centers of Excellence to be cared for by doctors/therapists, nurses who are Huntington’s Disease specialist.  If a family is new to HD, they can gather information and resources regarding HD.

This year in the U.S., approximately 99 Team Hope Walks will have been organized, raising money, heightening awareness and supporting the HD community. Huntington’s Disease Society of America Website (HDSA)

   

You can still donate to the event until December 31, 2019.  http://www.hdsa.org/thwsanfrancisco

We Can Never Lose HOPE…..

Author Therese Crutcher-Marin

I’m a Huntington’s disease advocate having lost my three (3) sisters-in-law to the disease.  We just announced that as of January 1, 2020, we will be a HDSA San Francisco Bay Area Affiliate.  Amy Fedele is the Co-Chair, I’m the Chair.  The Stanford and UCSF Centers of Excellence Teams are involved and it is our hope to increase our presence in the SF Bay Area that has a population of 7.1 million.

My author website is: https://www.theresecrutchermarin.com

You can read about my HD journey and the book I published, Watching Their Dance.  100% of the profits are being donated to the nonprofit, HDSA.  

 

 

HDSA

HDSA San Francisco Bay Area Affiliate Is Official

Yes, it’s official!  The Huntington’s Disease Society of America (HDSA) Board of Trustees approved our request to become a HDSA Affiliate! http://www.hdsa.org

As of January 1, 2020, the HDSA San Francisco Bay Area Affiliate will begin operating and continue developing a marketing plan for the year.

The Affiliate will strive to support HDSA’s mission: “To improve the lives of people with Huntington’s disease and their families“.

I want to thank the following Huntington’s disease advocates, the team, for their time and dedication to achieve this goal:

Amy Fedele

UCSF HD Team-Dr. Geschwind, Mark Thoma, Julia Glue, Dr. Dietiker https://memory.ucsf.edu/

*Liz Hartland

*Morgan and Chase Parks

*Denny Cone

*Fran and Keith Marin

*Cole Holderman

If you are interested in becoming involved in the fight against Huntington’s disease, contact me at theresecrutchermarin@gmail.com.

Currently, there are 54 HDSA Chapters & Affiliate across the U.S.  At the first of  the year, there will be 55 Chapters & Affiliate!

 

 

 

 

We Can Never Lose HOPE………

About Author

The Summer of 1968

Grandmother, Chris Crutcher

As the summer heat and long days fade into the colors of Fall, which is my favorite time of year, I find myself reminiscing of summers gone by; particularly the summer of 1968.  

This was my last summer in Shawnee Mission Kansas, where I grew up with grandparents, aunts, uncles, cousins close by, and it was as the beginning of a change I never imagined.  When the summer of 1968 ended, I was coming of age and it was the last time I thought and acted like a kid.  What-does-coming-of-age-mean

Crutcher Family 1966

In May 1969, my family moved to Riverside California and a new social culture was cast upon us. Gone were the carefree days of walking to the swimming pool with my sisters and neighborhood kids, catching fireflies at dusk, making up games, playing outside until my father stood on the back porch and whistled for us to return home and itching the chigger bites until they turned red.  

This is not an unusual story, we all become teenagers, priorities change and drama enters lives.  At age 13, in sunny California, I still went to the swimming pool with my girlfriends, but it was to get a tan, not get my hair wet and gossip.

I’m a Huntington’s disease advocate having lost my three (3) sisters-in-law to this horrific disease.  A group of HD advocates have formed a team to become a HDSA San Francisco Bay Area “Affiliate” to serve the HD community of 7.1 million.  The San Francisco Bay Area deserves to have a HDSA Chapter which we will hopefully become over the next couple of years.  What is Huntington’s disease

The nonfiction book, Watching Their Dance is available on many book websites and $7.00 is donated to HDSA every time the book is purchased.  https://www.amazon.com/-/e/B06ZY85776

We Can Never Lose Hope…….

 

HDSA Fundraising events

KPIX5 Bay Area Focus, Dr. Geschwind on Huntington’s Disease & Upcoming SF Hope Walk

On September 26th, 2019 Dr. Geschwind, from UCSF Center of Excellence, and myself were interviewed by Michelle Griego from KPIX5 Bay Area Focus. The segment aired last Sunday.  WhatIsHD?

A huge thank you to Michelle and KPIX5 staff for giving us the opportunity to promote the HDSA San Francisco Team Hope Walk this Saturday, October 5th.

To register, visit http://www.hdsa.org/thwsanfrancisco

Dr. Michael D. Geschwind is a neurologist at the UCSF Memory and Aging Center who specializes in assessing and treating rapidly progressive dementias, including prion diseases such as Creutzfeldt-Jakob disease. He helped establish a hospital program for the assessment of rapidly progressive dementias at UCSF Medical Center, the first of its kind in the country.

In his research, Geschwind studies cognitive dysfunction in movement disorders, such as Huntington’s disease, corticobasal degeneration, progressive supranuclear palsy and other parkinsonian dementias. https://www.ucsfhealth.org/michael.geschwind

To watch the video, click here:  https://www.youtube.com/watch?v=S0ENBjOlAe4

We Can Never Lose HOPE…….

Huntington's Disease

A World Free of Huntington’s Disease

Huntington’s Disease Society of America’s Vision (HDSA) Statement is “A World Free of Huntington’s Disease (HD)”.

Wouldn’t that be wonderful?  No more suffering, no more uncertainty, no more contemplation of whether to have a child or not; too many issues to list that affect HD families that most of the world doesn’t have a clue about.

The picture shows logo’s of companies that support the Huntington’s community in their own unique way.  Wouldn’t it bee nice if we didn’t need these companies who supply durable medical equipment, medications, etc. to support a loved one with Huntington’s disease.

Hopefully, in the not too distant future, these companies can concentrate on curing other devastating neurodegenerative diseases like ALS, Alzheimers and Parkinson’s to name a few.

We Can Never Lose HOPE……

Therese selling books at the Woody Guthrie Folk Festival in Okemah OK in July 2017

I’m a Huntington’s disease advocate having lost my three (3) sisters-in-law to this horrific disease.  A group of HD advocates and myself have formed a team to become a HDSA San Francisco Bay Area “Affiliate” to serve the HD community where 7.1 million people live.  The San Francisco Bay Area deserves to have a HDSA Chapter which we will hopefully become over the next couple of years.

My book, Watching Their Dance” is available on many book websites and $7.00 is donated to HDSA every time the book is purchased.  https://www.amazon.com/-/e/B06ZY85776

 

HDSA Fundraising events

HDSA Pacific Region

Author Therese Crutcher-Marin

The Pacific Region of the Huntington’s Disease Society of America (HDSA) has many events coming up in October.  Check them out below and attend, if you can, to help in the fight against Huntington’s disease (HD).  HD is a rare, fatal, genetic brain disorder with NO CURE.  what is HD?

HD Freeze on Sept. 28th.   http://www.hdsa.org/freezehd

San Francisco Team Hope Walk & 5K Fun Run on Oct. 5th.  http://www.hdsa.org/thwsanfrancisco

San Diego Team Hope Walk on Oct. 6, 2019.  https://hdsa.donordrive.com/index.cfm

Monday Night Football, Tacos, & Beer to Bash HD on Oct. 21st in San Jose  https://app.donorview.com/jME5

Hounds 4 Huntington’s Dog Costume Walk on Oct. 26th in Petaluma  https://app.donorview.com/QV7R

Tuscan AZ Team Hope Walk on Oct. 26th  https://hdsa.donordrive.com/index.cfm

Orange County Team Hope Walk on Oct. 26th  https://hdsa.donordrive.com/index.cfm?

We Can Never Lose HOPE…………..

100% of the proceeds from the nonfiction book, Watching Their Dance, is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA) to help in the fight against Huntington’s disease.

Therese’s Author Website: https://www.theresecrutchermarin.com

 

About Author, Mindful

Tomorrow Is Not Promised To Anyone

The other day, a gal said to me, “Your family does so much; you travel a lot, your kids do marathons, triathlons, you give time to the the Huntington’s disease cause, the homeless, you write books.”  She looked at me quizzically, “Why do you do so much?”

I looked at her curiously, thinking it was a funny question because this is how we have always lived our lives.  We taught our children to work hard and play hard and I remember saying to them over the years, “Life is short, enjoy it, experience it; tomorrow is not promised to anyone; we never know what the future will bring, take a chance, have no regrets, learn from your mistakes”.

When Huntington’s disease (HD) entered our lives, it taught me many things and one was to appreciate the life I had with John and the kids every single day.  We didn’t know, until 2016, whether John inherited the mutated huntingtin gene, so we embraced life with the kids and had as much fun as possible together.

We Can Never Lose HOPE………

Read the first Chapter of Watching Their Dance by clicking on link: WatchingTheirDanceFirstchapter1

Author Therese Crutcher-Marin Book Signing in Auburn CA

Take a look at my Amazon Author Page http://amazon.com/author/theresecrutchermarin

My author website where you can also purchase my book is https://www.theresecrutchermarin.com

A Love Story, The Marin Siblings

That’s How Love Moves

That’s how love works………That’s how love moves……..

Like a river running through you………lyrics from That’s How Love Moves by Faith Hill.

Once John wrapped his arms around me, I was never the same.  He saw something in me that I never knew I had…………………. courage.  Courage to love despite the enormous challenge that lay ahead in the years to come.

The challenge?  Huntington’s disease (HD); the cruelest disease on the planet.  A rare, fatal, genetic brain disorder that has all the symptoms of ALS, Alzheimers, and Parkinson’s at the same time and their is NO CURE.  John and his three (3) sisters were at risk, a 50/50 chance, for inheriting the horrific disease that destroyed their mother.  What is Huntington’s disease?

Lora, Cindy and Marcia Marin

The unconditional love I had for the Marin siblings and the love John had for me, saved me; saved me in every way possible.  Love kept me grounded, even during the worst of times when I was desperate to escape from the 24-year nightmare; watching his three sisters battle HD.

We Can Never Lose HOPE……..

100% of the proceeds from the nonfiction book, Watching Their Dance, is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA) to help in the fight against Huntington’s disease.

Therese’s Author Website: https://www.theresecrutchermarin.com

 

 

 

 

Mindful

More On “It’s The Little Things In Life”

Author Therese Crutcher-Marin

I believe that recognizing and embracing the little things in life every day is important to our happiness. I explain it in my nonfiction book. 

Watching Their Dance:  Excerpt from page 61, Chapter 7

John and I had just gotten married and back from the honeymoon and settling into our apartment in Roseville California.

Anyone looking at us would have seen a happy, well-matched couple starting what seemed a wonderful life together.  Little would they know the challenge that lay quietly beneath our joy.  Every day, I consciously reminded myself to live in the present moment.  It was the small stuff I savored: waking up next to John, seeing him every night, eating dinner together, talking about our day, feeling his arms around me.  Those moments were precious, and I selfishly saved them just for me.”

 

We Can Never Lose HOPE…………….

Therese’s Author Website:  https://www.theresecrutchermarin.com