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Huntington’s Disease

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…..

 

 

 

Hope, Huntington's Disease

Great Time to Get Involved

Today is the last day of May; HD Awareness Month. With the publicity generated this month by HD organizations and community members, hopefully, we have heightened awareness of this horrific disease that devastates HD family for generations.  

I wish to thank Dr. Carroll, a gene positive HD advocate and a devoted, brilliant HD researcher, who has done so much for Huntington’s disease.  Jeff says it a great time to become involved in HD research!  

Dr Jeff Carroll, PhD — Boston, USA  https://westerntoday.wwu.edu/features/psychology-s-jeff-carroll-awarded-new-100k-grant-to-research-huntington-s-disease  

 Article, Slightly long CAG repeats are more common than we thought.

For more information about Huntington’s disease please visit  http://www.HDSA.org  & join the fight! To for more information about HD Clinical Trials please visit  http://www.HDTrialFinder.org 

#LetsTalkAboutHD    #HDSAFamily

Huntington's Disease

Scrubs TV Show and Huntington’s Disease

In an earlier post this month, I showed some scenes from the TV show House, who had a character, 13, who was at risk for Huntington’s disease.

In the season 8 finale of Scrubs, a popular medical TV show, one of the doctors diagnoses a 70-year-old woman with Huntington’s disease. While manifestation of the disease is more common during middle age, presenting symptoms later on is possible. JD, the physician on the show, does his best to explain the disease in a manageable, understandable way without neglecting to mention that the patient’s son, Mr. Stonewater, is also at risk for this genetic disease. JD offers Mr. Stonewater the genetic test that would reveal whether or not he had inherited the same faulty gene as his mother. Mr. Stonewater asks for some time to consider his options.

JD goes through the rest of his day fazed, as he knows how devastating the disease is and how difficult a decision it is whether or not to pursue genetic testing. When Mr. Stonewater informs JD that he does not want to take the test, JD respects his wishes.

May is Huntington’s Disease Awareness Month

Therese will be selling her memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, at HDSA Annual Convention, June 7-9.  The book is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks format. 100% of the profit from the book is donated to HDSA. 

In December, Therese and John donated $9,015.00 to Huntington’s Disease Society of America (HDSA) which was the profit from 2017 book sales.

#LetsTalkAboutHD   #WeCanNeverLoseHOPE  #WatchingTheirDance  #HDSAFamily

Huntington's Disease

Prevalence of Huntington’s Disease Worldwide

 Around the world, cases of Huntington’s disease are found in 5-10 out of 100,000 people. There does not appear to be a difference in the numbers for men and women while some variance is recorded for ethnic groups and geographical locations.

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. 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://www.hdsa.org        http://hdsa.org/what-is-hd/#stages  

For instance, rate of occurrence is highest in peoples of Western European descent, averaging around 7 per 100,000 people while only about one case per million is recorded for people of Asian and African descent.

According to nhs.uk, the rate of Huntington’s disease in the United Kingdom is 12 per 100,000 people.

In the United States approximately 10 per 100,000 have the faulty huntingtin gene and live either waiting for symptoms to begin or live/struggle with the disease.   http://web.stanford.edu/group/hopes/cgi-bin/hopes_test/hd-in-europe/#united-kingdom  

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, a nonfiction/memoir, can be purchased on Therese’s author website        Amazon     B&N       &  Kindle, Kobo, Nook, and iBooks format.

100% of the proceeds from the book is being donated to Huntington’s disease organizations around the world. 

We can never lose Hope………………..Therese

Subscribe to Therese’s Blog via Email

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Huntington's Disease

Update on the Huntington’s Disease Parity Act

Max Moon, board member of the HDSA Northern California Chapter, keeps the board updated on the HD Parity Act.  Here’s his latest report.

  1. HDPA currently has 101 cosponsors in the House, 3 in the senate, and we are looking to push that number up even further. We need more republicans to sign on to the bill in the House and Senate to push the bipartisan support for the bill. We have several Dems who want to sign on in the senate but are holding off until we get another republican member to join in. If you have friends, loved ones, relatives affected by HD who live in states with Republican Senators, especially Tennessee, you can write to their members of Congress on their behalf! You can go to www.hdsa.org/takeaction and use the zip code of your loved one to send a message on their behalf.
  2. We are still looking for a useful healthcare reform bill to come out of the House or Senate, we are deeply concerned about the discontinuation of the CSR payments by the current administration, and know that for families who have found healthcare on the exchanges it will inevitably drive up healthcare premiums significantly for families that cannot afford it. We are watching the Alexander/Murray bill to see what kind of reforms will be included in the bill and are hopeful that a bipartisan approach will find a path to reforming our healthcare system that will help HD families.

HDSA advocacy works to advance legislation and policy to improve the lives of HD families by raising awareness about HD in the U.S. Congress, by promoting legislation, policy and regulations that would help individuals in the HD community, by educating Federal agencies about HD, and by partnering and collaborating with national organizations that have common goals.  Jennifer Simpson, HDSA Manager of Advocacy & Youth Programs.  Jennifer is on the left with hands in the air.     http://hdsa.org/about-hdsa/advocacy/  

100% of the proceeds from Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, a memoir/nonfiction book, is being donated to Huntington’s disease organizations around the world.

To purchase the book, go to Therese’s website:  http://www.theresecrutchermarin.com and Amazon    B&N     Kindle     Kobo      Nook 

Huntington's Disease

Dr. Ed Wild Shares Good News About Huntington’s Disease

          

A cure for Huntington’s disease (HD) is within reach, a charity conference has heard.

Dr. Ed Wild, one of the world’s leading researchers into the degenerative neurological condition said research into treatments for the condition was now on a “knife edge.”

Wild outlined how several particularly exciting drug programmes were now moving into advanced stages.

He told the delegates at the annual Scottish Huntington’s Association (SHA) conference: “In my career working with HD I’ve never been more excited,” he said.

“Not only is research into effective treatment making real progress, but the way the condition is perceived has changed beyond all recognition.

“When I first started working with HD patients it was very much a disease hidden away, people did not want to talk about it. Now people are signing up for worldwide clinical trials and openly sharing their stories to increase understanding.

“It really is beginning to step out of the shadows.”

The latest drugs in development aim to reduce production of the faulty protein created by the genetic change that causes HD. The treatment aims to allow the brain to repair damaged cells; it is hoped this will have the effect of slowing down the rate that symptoms develop.

The SHA is the only charity in the country that supports families living with the condition through a team of HD specialists; a dedicated youth support team and a financial wellbeing service.

HD is a complex neurological condition with symptoms that typically begin to develop between the ages of 30 and 50. It causes three main groups of symptoms: changes to thinking processes – a type of early onset dementia, loss of muscle control and involuntary movements which lead to loss of speech and swallow along with mental illness.

Those impacted by HD may eventually lose the ability to walk, talk, eat, drink, make decisions or care for themselves requiring 24-hour care. It is also hereditary with each child of those diagnosed carrying a 50% risk of developing the disease. There is currently no cure.

It is estimated there are around 1,100 people living with HD in Scotland and between 4,000 to 6,000 potentially at risk.

“HD is often called the most curable incurable disease, because unlike other neurological conditions, such as Alzheimer’s, we know exactly what causes it, we just didn’t know how to treat it, I strongly believe we are now moving in the right direction,” added Dr Wild.

  http://thirdforcenews.org.uk/tfn-news/cure-for-huntingdons-disease-within-reach#8bhF75lBlf3ubCts.99   

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   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks file.

100% of the proceeds is being donated to HDSA in the U.S. and to Huntington’s disease organizations around the world.

We can never lose HOPE…….Therese

 

 

Huntington's Disease

To Test or Not To Test? That is the Question?

People at-risk for Huntington’s disease face a difficult choice about genetic testing, given the current absence of an effective treatment or cure. Many people see no benefit in knowing that they will someday develop the disease. Others want an end to uncertainty so that they can make informed choices about the future. The decision whether to test or not is intensely personal and there is no “right” answer.  http://hdsa.org/living-with-hd/genetic-testing-family-planning-prenatal-testing/ 

It turns out that a small percentage of at-risk people actually get tested for HD, approximately 5-10%. I was somewhat surprised when I learned the statistic, but then when I stopped and thought about, John didn’t want to know………….he wanted to live with the HOPE that he didn’t have the mutated gene.

 I participate in HD support groups on Facebook and whether to test or not is always a topic of concern and controversy.    https://www.facebook.com/groups/406770452750893/?ref=br_rs

We can never lose HOPE………..Therese

100% of the proceeds from Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, a memoir/nonfiction book, is being donated to Huntington’s disease organizations around the world.  To purchase the book, go to Therese’s website:  http://www.theresecrutchermarin.com and Amazon    B&N     Kindle     Kobo      Nook 

Huntington's Disease

James Patterson includes Huntington’s disease in his Book

Bruce Springsteen, my favorite artist, published his memoir Born to Run, in 2016. John knows I love memoirs so gave me the book for Christmas.  I didn’t start reading it until we started on my book tour in June.  It’s a big book, 510 pages, and Bruce shares every detail of his life along with his deep, intimate, emotions about everyone and everything.    http://www.rollingstone.com/music/features/bruce-springsteen-goes-deep-on-revelations-in-new-memoir-w443387  

I like to read two books at a time, so the other day we were at a flea market in Louisville Ohio and John picked up some books. When we got back to the RV, I looked through the pile and chose a Patterson book, Merry Christmas, Alex Cross.

I would bet most folks have read a James Patterson book; an author who created more enduring fictional characters than any other novelist writing today with his Alex Cross, Michael Bennett, Women’s Murder Club, Private, NYPD Red, Daniel X, Maximum Ride, and Middle School series.   http://www.jamespatterson.com/    

On the 33rd page of the book, about a 1/3 of the page down was this:  “Prior to the workplace lawsuit, he’d represented a California biotech company being sued by relatives of people who’d participated in a trial of a new Huntington’s disease drug and died shortly after treatment.”

You could have blown me over with a feather when I read it.  I got up and found John, showed him and we both looked at each and I said, “What are the chances of you picking up a book that has Huntington’s disease mentioned in it?”

I want to thank Mr. Patterson for including Huntington’s disease in his book because it creates awareness of the disease.  Maybe someone reading the book who knows nothing about the disease will look it up and make a donation to a Huntington’s disease organization somewhere in the world. That’s what I hope for anyway.   Watching the Dance Huntingtons Disease

We can never lose HOPE……………Therese 

To purchase Therese’s book, Watching Their Dance: Three Sisters, a Genetic Disease, and Marrying into a Family At Risk for Huntington’s, please go to her author website:   http://www.theresecrutchermarin.com 

Hope, Huntington's Disease

HDSA Team HOPE Walks

The Team Hope Walk program is HDSA’s signature grassroots fundraising campaign designed to provide hope and support for those touched by this devastating disease. All proceeds support HDSA’s mission to improve the lives of people affected by Huntington’s disease and their families. Since their inception in 2007, Team Hope Walks have occurred in over 100 different cities and have raised over $12 million for the cause. https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.eventGroup&eventGroupID=857D7BD6-C299-258B-BC953D67026BF9CA  

John and I are halfway through my book tour and on our way to Hilliard Ohio for a Team Hope Walk this Saturday, June 22.  https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1189  We will attend another Team Hope Walk in Ohio on August 5 in Dayton.  https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1221  We’re looking forward to visiting Ohio, a state we have never been to.

    

  Therese is donating 100% of the proceeds to her book to Huntington’s disease organizations around the world.  Please see her author website to purchase her nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.    http://www.theresecrutchermarin.com 

Huntington's Disease

Part 2-Interview with Dawn Landau-Blogger on the Huffington Post

In Honor of Huntington’s Disease Awareness Month: a new book about love, fear, and living with HD

Therese Crutcher-Marin went into her marriage knowing that HD was a risk. In fact, she ran toward it, for love. At a time when there were no tests for HD, she embraced the man she loved and hoped for the best. Her new book looks at that decision, and it’s enormous impact.

I wanted to know more, and Therese agreed to be interviewed, for Huntington’s Disease Awareness Month. We both wanted to have this interview come out much earlier in May, to honor and bring awareness to the illness, but two busy schedules made that difficult. In the end, we both agreed that for those of us living with Huntington’s, EVERY month is Huntington’s Disease Awareness month! Purple and blue are the colors for HD. Wear them for someone you love, who is fighting this devastating disease.

Tell us how you first learned about Huntington’s Disease.

In 1978, John Marin, my college sweetheart, and I were graduating from college and planned to be married. His three older sisters, Lora, Marcia and Cindy, who had become my close friends, couldn’t explain to me why their mother had been in Napa State Hospital for 20 years. They asked their father but he would not tell them. The sisters contacted an aunt on their mother’s side of the family, whom they hadn’t seen in years, and on November 3, 1978, the Marin secret was revealed to us. Phyllis, their mother, had Huntington’s disease

Did your husband have a history of HD in his family, prior to that?

Their mother’s side of the family had a history of HD but their father knew nothing about it when he married Phyllis.

To be continued…………….

We can never lose HOPE…………………..Therese

Therese is the author of Watching Their Dance: Three Sisters, a Genetic  Disease and Marrying into a Family At Risk for Huntington’s.  It’s available on her author website:  http://www.theresecrutchermarin.com  

100% of the proceeds is being donated to Huntington’s disease organizations around the world.