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#HDawareness

HD Awareness

Huntington’s Disease, One of 7000 Rare Diseases

It is May 31st and we close out Huntington’s Disease Awareness Month  #LetsTalkAboutHD

Author Therese Crutcher-Marin

For me, it’s not the end of raising awareness because I’m constantly posting Huntington’s disease (HD) information on all my social media platforms and wearing my Team Hope Walk T-shirt whenever I can.  What is Huntington’s Disease 

Since Huntington’s Disease is a rare disease, you may not know there are over 7,000 rare diseases. A rare disorder is a disease or condition that affects fewer than 200,000 Americans.  On the NORD, National Organization for Rare Disorders, website Huntington’s Disease is listed.   https://rarediseases.org/?s=H&post_type=rare-diseases

NORD’s mission statement:  “NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them.  NORD, along with its more than 300 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.”

Register for the NORD Virtual Forum on July 18-19, 2020:  https://rarediseases.org/living-rare-forum/

Wikipedia says, “The US organisation Global Genes has estimated that more than 300 million people worldwide are living with one of the approximately 7,000 diseases they define as “rare” in the United States.”

We Can Never Lose HOPE…….

To receive my blogs, go to my Author Website https://theresecrutchermarin.com and sign up.  When you sign up, I will send you the first Chapter of my nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s

 

 

 

 

 

HDSA Fundraising events

Running for a Huntington’s Disease Cure

May is Huntington’s Disease Awareness Month.  #LetsTalkAboutHD 

In 2016, I asked Fran, my daughter-in-law, and Vanessa, my daughter, to run in the New York City Marathon on the Huntington’s Disease Society of America (HDSA) TEAM.  New York Road Runners offers blocks of guaranteed, non-complimentary entries to qualified and selected nonprofits through the Official Charity Partner Program of the TCS New York City Marathon. https://www.nyrr.org/getinvolved/charity-partners/charity-partners-tcsnycm

Both of these women run marathons, 10K’s and half marathons so they were excited to apply and make money to help in the fight against the cruelest disease on the planet, Huntington’s disease.

The nonprofit, HDSA, participates in the TCS New York City Marathon Charity Partner Program.  Fran and Vanessa had to apply to HDSA and commit to raising $3,500.00.  Approximately 20 people were admitted to run on the HDSA Team and the team raised over $100,000.00.

Approximately 50,0000 people run the marathon.  The event was very organized and the city was packed with bystanders.  As they ran through the New York boroughs, people where partying and screaming and clapping for the runners.  These two woman cut 10 minutes off their Marathon time because of all the support as they ran.

John, myself, Keith, Scott, Dawn and Jim Garret flew to NY and we all cheered them on.  It was a blast and both Fran and Vanessa raised together $8,000.00

We Can Never Lose HOPE……

The Marin Siblings

The Marin Women & Huntington Disease

UMay is Huntington’s Disease Awareness Month and I write today to honor Marcia Louise Marin, the second sister-in-law stolen from us by the insidious Huntington’s disease (HD).  What is HD   

Marcia Louise Marin

Marcia was twenty-six when I met her.  She was shy but sophisticated, glowing with gentility—the first woman I knew who looked chic in jeans, maybe because she had them dry-cleaned.  Her light brown curly hair and makeup were always impeccable. 

Neither Lora or Marcia attended college; after Marcia graduated from high school, she’d gone to work in San Francisco in the typing pool at Pacific Bell.  But she was smart and ambitious, and ten years later, her title was Marketing Representative. 

In 1985, Marcia was in a terrible auto accident and retired from  Pac Bell.  Her co-workers though she was drunk on the job because she fell off her high heels and she couldn’t remember things.  The next year, Marcia was diagnosed by neurologists with Huntington’s disease at the University of California, San Francisco.   

It was a tremendous blow for all of us but, unfortunately, I had seen symptoms in Marcia for about three years; twitches, losing her balance, taking falls.  #LetsTalkAboutHD

John and I miss her everyday and wish we could have grown old together.  On October 25, 2020 Marcia would have celebrated her 71st birthday.

We Can Never Lose HOPE…. 

Author Therese Crutcher-Marin

 

Lora, Cindy, Marcia Marin

My Author Website:  https://theresecrutchermarin.com/what-is-huntingtons-disease/

 

HDSA Fundraising events

The Marin Family Team Raises Over $1,000.00 for Huntington’s Disease

 

On Saturday, May 2nd, 2020, the Marin Family Team raised over $1,000.00 to help in the fight against Huntington’s Disease (HD) by participating in a VIRTUAL Team Hope Walk hosted by the nonprofit, Huntington’s Disease Society of America (HDSA).  http://hdsa.org

HDSA is a premier nonprofit dedicated to improving the lives of everyone affected by Huntington’s disease: a rare, fatal, genetic brain disorder that has the symptoms of ALS, Parkinson’s and Alzheimer simultaneously, and there is NO CURE.

Keith & Fran Marin and Jody Sorenson, Fran’s mom

Since the fundraising event was VIRTUAL, my husband, John, myself and my 90-year old dad, Jim, walked in our neighborhood as did folks across the country.  Our children and their spouses also walked and even though the HD community couldn’t be together, because of the Coronavirus, I felt a sense of camaraderie and solidarity in my heart.

To make a donation, go to:  https://app.donorview.com/Donation/DonationInfo

We Can Never Lose Hope……..           #LetsTalkAboutHD

 

HDSA, Huntington's Disease

What is Huntington’s Disease? A New Video

For more information and resources, please visit http://www.HDSA.org. The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today, hope for tomorrow for people with Huntington’s disease and their families.

In the battle against Huntington’s disease no one fights alone. At HDSA, family is everything.

#HuntingtonsDisease #LetsTalkAboutHD #HDSAFamily #HDSA #Huntingtons #Disease #Brain #HD

 

Author Therese Crutcher-Marin, HD Advocate

To learn about Therese, visit her Author Website: https://www.theresecrutchermarin.com

We Can Never Lose HOPE….

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…

 

 

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.

 

 

 

HDSA San Francisco Bay Area AFFILIATE

2020 Welcomes the New HDSA San Francisco Bay Area AFFILIATE

Author Therese Crutcher-Marin

I’ve always welcomed a challenge in my life, my work, and in my volunteer efforts.  Living at risk with John for Huntington’s disease (HD) was the biggest challenge of my life, and, luckily we made it through the fire.  HD is a rare, fatal, genetic brain disorder with NO CURE.  When a parent has HD, each child has a 50/50 chance of inheriting this horrific disease.  For more information on HD, visit http://hdsa.org.

HD Advocate Amy Fedele

When a challenge presented itself to Amy Fedele, an HD advocate in the San Francisco Bay Area, and myself, we embraced it.  https://www.facebook.com/amy.fedelelucchese

 

The San Francisco Bay Area, with 7.1 million folks, does not have a Huntington’s Disease Society of America (HDSA) Chapter or Affiliate; 54 Chapters/Affiliates exist across the U.S.  The HDSA Northern California Chapter territory included the Bay area; their territory was huge and impossible to carry out HDSA’s mission in this part of the Northern California.  So, the new SF Bay Area Affiliate will work in partnership with them to fill in the gaps of service, To view the Chapters/Affiliates across the country, visit:  https://hdsa.org/about-hdsa/chapters-affiliates/

So, with that said, last year, Amy and I began the process to become a HDSA “Affiliate” with the help of Denny Cone, HDSA Regional Development Manager.  I wrote a Letter of Intent, filled out paperwork and submitted it to HDSA.   On October 3, 2019 we were granted the status of San Francisco Bay Area Affiliate and we begin operation today!

It’s a great New Year for the HD community and we are thrilled to have the first Affiliate meeting on January 11, 2020 at University of California, San Francisco Center of Excellence.

We Can Never Lose HOPE…………………

Visit the link to read about overcoming life’s challenges:https://www.tentree.com/blogs/posts/10-ways-to-overcome-lifes-challenges

 

 

 

 

Therese-Author

Hang On To A Dream…………….

What is life without dreams?  Or, another way to put it, what are the goals you wish to achieve in your life because you need to set goals in order turn your dreams into reality.

I would venture to say, most people have dreams (goals); whether it be a dream of owning a certain car, a dream vacation, dream home, dream of a spending your life with someone you love, etc.

Article on Differences between goals and dreams

Growing up in Kansas, my dreams were not grandiose; they were pretty simple dreams that I thought would make me happy, i.e. falling in love and sharing my life with my soulmate, going to college, having children and serving my fellowman.

HDSA 2019 Convention

After discovering Huntington’s disease could steal the people I loved, I dreamed of “A World Free of Huntington’s Disease“. I have hung on to that dream for 41 years and will never let go of it and will work towards it until I die.

This is also the Huntington’s Disease Society of America (HDSA) Vision Statement.  hdsa.org/about-hdsa/  

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.  As of January 1, 2020, a dream of mine will come to fruition.  A new, official HDSA San Francisco Bay Area Affiliate will begin operating and Amy Fedele is the Co-Chair and 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 San Francisco 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.