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.
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/
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:
Talk to a counselor
Talk with your primary care physician about anti-depressants
Attend a support group that addresses the issue
Have open communication with family
And never lose HOPE
Two good articles to help you through tough times:
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
-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!
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.”
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
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.”
-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
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/
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
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.