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#huntingtonsdisease #WatchingTheirDance #HDSA

HDSA Northern California Chapter

Dr. Wheelock & Khandar are Honored at the HDSA Sacramento Team HOPE Walk

The HDSA Northern California Chapter will honor Dr. Vicki Wheelock, Clinical Professor Neurology UC Davis, and Dr. Suketu Khandhar, Kaiser, Movement Disorder Neurologist both practicing in Sacramento at the Team Hope Walk, September 8, at the River Walk Park, 651 Second Street in West Sacramento.

Register for the The Sacrament Team Hope WALK at:  http://www.hdsa.org/thwsacramento 

The Mission at the heart of the Northern California Chapter is dedicated to improving the lives of everyone affected by Huntington’s disease (HD).  Since there is no cure for this horrific disease that affects both children and adults, the 54 HDSA Chapters around the country are charged with fundraising and heighten awareness.  The dollars generated from local fundraising events help fund 43 Centers of Excellences around the county, fund HD support group facilitators, and fund an HDSA social worker to help HD families with resources.  Northern California Chapter website: http://northernca.hdsa.org/

Dr. Vicki Wheelock

Dr. Vicki Wheelock’s HD patients are seen at the UC Davis Huntington’s Disease Medical Clinic, 3160 Folsom Boulevard, Sacramento, CA. 916-734-3588.   https://www.ucdmc.ucdavis.edu/huntingtons

Dr. Suketu Khandhar with genetic counselor Mara Stirfry-Platt

Dr. Khandar’s HD patients are seen at Kaiser Permanente Huntington’s Disease/ Genetic Movement Disorder, 1650 Response Road, Sacramento, CA. 916 973-5000  https://mydoctor.kaiserpermanente.org/ncal/specialty/genetics/specialty_clinics/huntington_disease.jsp 

We Can Never Lose Hope……………………

Taking Care of Yourself

Coping With a Challenging Issue

When I made a conscious decision to marry John, despite his unknown gene status for Huntington’s disease (HD), I knew full well the possible consequences of my decision.  I was only 23 at the time, very naive, and didn’t really understand the ramifications of this horrific disease. HD is a fatal, genetic disorder that progressively destroys the nerve cells in the brain. There is no cure.  http://www.hdsa.org

With the 50/50 chance of inheriting the disease, I knew, based on statistics, that at least two (2) of the four (4) Marin siblings would carry the mutated huntingtin gene. Who is at risk:  http://hdsa.org/what-is-hd/#risk   

But, what I didn’t realize, was that it would be so hard, so emotionally depleting, so sad in so many ways.

My advice to those struggling with a challenging issue, like Huntington’s disease, is to:

  1.  Talk to a counselor
  2.  Talk with your primary care physician about anti-depressants
  3.  Attend a support group that addresses the issue
  4.  Have open communication with family
  5.  And never lose HOPE

Two good articles to help you through tough times:  

https://tinybuddha.com/blog/a-4-step-plan-to-deal-with-even-the-toughest-challenge/

http://time.com/3002833/how-to-be-resilient-8-steps-to-success-when-life-gets-hard/

We Can Never Lose HOPE……………

 

 

 

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Fundraising, Helping Others

Volunteer at the Nonprofit, HDSA Northern California Chapter

If you are interested in volunteering for the Huntington’s Disease Society of America Northern California Chapter, there are many opportunities where you can help. http://northernca.hdsa.org/

Here are a few ways you can contribute to improving the lives of  individuals and families affected by Huntington’s disease (HD):

* Participate in the planning and execution of Chapter events: Annual Team Hope Walk, annual Chapter Convention, and Kaiser Permanente Education Days
* Provide transportation to HD families
* Provide light housekeeping/childcare for HD families                                                                          *Participate in clinical trials and observational studies
* Make phone calls to donors to thank them for their contribution
* Serve on the HDSA Northern California Chapter Board of Directors                                                                      *Post on NorCal Chapter social media platforms: Facebook, Twitter, Instagram                                                    *Assist with marketing/publicity/outreach    

http://hdsa.org/volunteer-opportunities/  

                               

We Can Never Lose HOPE…………….

Author Therese Crutcher-Marin

Therese has been a member of the HDSA Northern California Chapter Board of Directors since January 2017.  She will be president of the Chapter in 2020.

Therese-Author

Happy 4th of July America!

Fun Facts Regarding 4th of July and “Our Declaration of Independence”

Today in history:   https://www.loc.gov/item/today-in-history/july-04/

50 Facts about the Declaration of Independence: https://www.landofthebrave.info/declaration-of-independence-facts.htm

-It could be argued that “Independence Day” should be July 2nd, 1776.  

-It was on July 2nd 1776 that our “Continental Congress” voted in favor of independence.

-On July 4th it was officially adopted and published in local papers.  Only our president of congress, John Hancock and secretary, Charles Thompson had signed the declaration on the 4th of July 1776.

-John Adams, later to be our president, thought July 2nd should be our day of independence.

To reminisce just a bit:  When I was growing up in Kansas, I loved sparklers.  My sisters and I had so much fun running around on the five acre backyard property of my Aunt Mary and Uncle’s Bill’s home.  Kansas has thunderstorms all summer long so no one worried about fires.  We also shot off bottle rockets with my cousins, Mike, Rick, Tim, Larry Mike, Kevin and Grant. Great memories!

From my family to yours, Have a wonderful 4th of July! 

 

 

 

 

We Can Never Lose Hope…………

 

 

 

 

Huntington's Disease

Trey Gray

Trey Gray has had a successful career as a professional drummer. Gray played with Faith Hill on her climb to fame for seven years and then played with Jewel. He is now the drummer for the popular country duo, Brooks and Dunn. In 2003, Trey Gray tested positive for the Huntington’s disease gene and has since been committed to supporting research and raising awareness about HD. http://aheaddrumsticks.com/trey-gray.html

Trey became the official spokesperson for The Huntington’s Disease Society of America. He’s glad he can help in heightening awareness of the disease. He hopes to put a face on this terrible disease and to give other families hope and faith to know my generation will be the last to have to deal with this.

Trey said, “People can help by going to the web-site hdsa.org. There you can find ways to volunteer, make a donation or just lend support to a family going through this disease.”

HDSA Northern California Chapter Convention/Education Day

Trey wrote a book jacket comment that appears on the back cover of my nonfiction book, Watching Their Dance“Tears, laughter,blessings and HOPE…An amazing story that will touch, and help, I pray, everyone who reads it.”        

Amazon link to book:   https://www.amazon.com/default/e/B06ZY85776?redirectedFromKindleDbs=true 

100% of the proceeds from the book is being donated to Huntington’s Disease Society of America.  

We Can Never Lose HOPE…..

 

 

 

Family, Watching Their Dance

Something Good That Came Out of My Family’s Tragedy

 

My family is everything to me and when I think back to how I almost didn’t have John, his three sisters, Keith, and Vanessa, in my life, I get goose bumps.  My three sisters-in-law were a huge part of John and my life and after losing  Cindy, the third sister to die from complications of Huntington’s disease (HD), I was looking for something good that could come out of my family’s tragedy.

That’s when I started writing John and my inspirational love story, Watching Their Dance, while living in the shadow of Huntington’s disease.  The book honors Lora, Marcia and Cindy while heightening HD awareness and generating dollars to help in the fight against the cruelest disease on the plant. 

“Behind every exquisite thing that existed, there was something tragic.” ~Oscar Wilde

Therese’s memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website  http://www.theresecrutchermarin.com  , Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format.

100% of the proceeds from Therese’s book is being donated to Huntington’s Disease Society of America.

We Can Never Lose Hope………………..

Grief, The Marin Siblings

What is Survivor Guilt?

My husband, John, suffers from Survivor Guilt since he survived Huntington’s disease when his three sisters did not.  It’s not uncommon for guilt to arise in grief.

“On a basic level, survivor guilt is exactly what it sounds like: a sense of deep guilt that comes when one survives something.  If you have heard of survivor guilt before what likely comes to mind is survivors of wars, natural disasters or other traumas.  Survivor guilt was actually first documented and discussed after the Holocaust and what has become clear in the decades that have followed is that survivors’ guilt is far more common than was initially understood.”

Articles on survivor guilt

 https://whatsyourgrief.com/understanding-survivor-guilt/ 

https://www.psychologytoday.com/us/blog/how-be-yourself/201711/six-tips-handling-survivor-guilt

So when might one experience survivor guilt?

-After causing an accident in which others died
-Guilt for not being present at the time of an accident to potentially save the person who died
-When a child dies before a parent
-Death of a sibling, especially in the case of an illness

We Can Never Lose HOPE……

Author Therese Crutcher-Marin is donating 100% of the profits from her book to Huntington’s Disease Society of America.  https://www.amazon.com/-/e/B06ZY85776

 

Family, HDSA

The Faces of Huntington’s Disease

In the following video are the faces of Huntington’s disease (HD); a devil of a disease that attacks adults and children.  Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It’s like having ALS, Parkinson’s and Alzheimers at the same time.  HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.  http://hdsa.org/what-is-hd/ 

My three sisters-in-law, Lora, Marcia and Cindy had HD and are now gone from our sight.  http://www.theresecrutchermarin.com 

There is no cure or therapy at this time.  

Video taken at the Huntington’s Disease Society of America (HDSA) Annual Convention, June 7-9-18, in Los Angeles, CA and I was there!

We can Never Lose HOPE….  

HDSA

HDSA Convention-Kickoff-June 8, 2018

Huntington’s Disease Society of America Annual Convention Continues: 

Today, Friday, is the day we begin to explore Huntington’s Disease topics  presented by experts/researchers/doctors in the HD world.  The presenters travel from around the world to speak at this convention, so I feel very lucky to be attending.

At 9 a.m., the day will begin with the Opening Keynote Speaker.

By early morning, the attendees will select the Educational Workshops they wish to attend

Please REMEMBER:  Some of the workshops will be LIVE STREAMED.  Go to:   https://guidebook.com/guide/119978/list/586374/

At noon, there will be a Community Awards Luncheon.  

The HDSA National Youth Alliance (NYA) will perform a Talent Show at 7 p.m.

 

We Can Never Lose HOPE….

 

 

HDSA

HDSA Annual Convention-June 6, 2018-Here We Come

Today, is a very exciting day as hundreds of folks flying, driving to Los Angeles to attend the 33rd Huntington’s Disease Society of America (HDSA) Annual Convention.   http://hdsa.org/about-hdsa/annual-convention/  

John and I are also on our way, in our RV; it’s about an eight hour drive from Northern California.  We’ll be staying a Dockweiler State Beach; it has 3.7 miles of ocean frontage and 288 acres of beach and only four miles from the Marriott Convention Center where the Convention is being held.

This is my second Convention, and I was so impressed with HDSA staff, the support and hope that resonated throughout the three days last year.  I truly believe this is my second family who understand the Huntington’s Disease journey because they are living it just as I did for 25 years with my three sisters-in-law, Lora, Marcia and Cindy Marin.

We Can NeverLose HOPE…………………

John, Dr. Vicki Wheelock, and myself at the 2017 HDSA National Convention in Schaumburg IL.

HOPE Walk held outside convention center at the 2017 HDSA National Convention in Schaumburg IL.

James and Mel Miller at the 2017 HDSA National Convention in Schaumburg IL.