Family, Fundraising

HDSA Sacramento Team HOPE Walk

A heartwarming story about Natalya Gonzalez, whose family struggles with Huntington’s disease. The family lives in the County of Yolo, a county located in the northern portion of the U.S. state of California.  http://hdsa.org/living-with-hd/juvenile-onset-hd/   http://hdsa.org/what-is-hd/

“A typical day for Natalya Gonzalez involves far more responsibilities and challenges than those of an average sixth-grader. The Yolo Middle School student balances schoolwork with family responsibilities as she pitches in at home to help her mother care for her father and an older sister, who both suffer from Huntington’s Disease, a debilitating genetic disorder.” Full article:  Yolo Student Thrives Despite Challenges

The Huntington’s Disease Society of America Northern California Chapter is organizing a Sacramento Team HOPE Walk to help families, like the Gonzalez’s.  Come out and walk on Saturday, Sept. 8th, at the River Walk Park in West Sacramento.  To sign up or donate to the event, go to http://www.hdsa.org/THWSacramento 

FB page https://www.facebook.com/hdsanocal/

 

We Can Never Lose HOPE….

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

Sacramento Team HOPE Walk-Sept. 8

We are getting close to the Sacramento Team Hope Walk.  Create your own Team and help the Northern California Chapter fundraise to continue supporting the four (4) Center of Excellences in Northern California, and the seven (7) Huntington’s Disease Support Group Facilitators.

Sign up here to participate:  http://www.hdsa.org/thwsacramento

CENTERS OF EXCELLENCE:

UC Davis Medical Center-Sacramento https://www.ucdmc.ucdavis.edu/huntingtons/team.html,

Kaiser-Sacramento/Bay
Area  https://mydoctor.kaiserpermanente.org/ncal/specialty/genetics/specialty_clinics/huntington_disease.jsp

UCSF Medical Center https://www.ucsfhealth.org/clinics/huntingtons_disease/

Stanford  Health Care-Bay Area https://stanfordhealthcare.org/medical-conditions/brain-and-nerves/huntingtons-disease.html

We Can Never Lose HOPE……………

Sponsor of Hope Walk

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…..

 

 

 

HDSA Northern California Chapter

Family is Everything

Last week, the HDSA Northern California Chapter Board members met with Dr. Vicki Wheelock. Lisa Kjer, social worker, Kathryn, Huntington’s D Clinic RN at UC Davis Medical Center, HD Clinic, to brainstorm how to increase the Chapter’s community disease outreach and fundraising.   https://www.ucdmc.ucdavis.edu/huntingtons/ 

The Chapter is dedicated to improving the lives of everyone affected by Huntington’s disease and we do this by generating dollars to help in the fight against this horrific disease that has no cure.  Through our fundraising efforts the Chapter supports/funds the HD Clinic, seven support group facilitators and the HD social worker.  

Kaiser Permanente HD website:   https://mydoctor.kaiserpermanente.org/ncal/specialty/genetics/specialty_clinics/huntington_disease.jsp   

The Huntington’s Disease Society of America’s slogan is, “Family is Everything” & “No one fights alone” . The Huntington’s Disease community is truly one big family.      http://northernca.hdsa.org/     https://www.facebook.com/hdsanocal/  

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