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#HDandJHDWarriors

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…………

 

HDSA

National Youth Alliance-Helping Young People Deal with Huntington’s Disease


HDSA’s National Youth Alliance (NYA) motivates youth to get involved in their local Huntington’s Disease Society of America Chapter. Every child of a parent with HD has a 50/50 chance of inheriting the expanded gene that causes the disease. If the child has not inherited this expanded gene, he or she will never develop the disease and cannot pass it on to their children.

The Miller Family whose 3 children are involved in the NYA.

The NYA is made up of young women and men ages 9-29 from across the U.S. that are impacted by Huntington’s.

The NYA mission to not only support young people within the HD community, but also inspire the youth of HDSA to get involved in the battle against HD and be proactive in this fight.   http://nya.hdsa.org/ 

Talking to Kids about HD: http://hdsa.org/wp-content/uploads/2015/05/TWKBrochure-FINAL-WEB.pdf 

We Can Never Lose HOPE………

 

Therese is the author of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. 100% of the proceeds are being donated to HDSA.   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-June 9, 2018-HOPE

Huntington’s Disease Society of America Annual Convention Continues: 

Today, Saturday, June 9th, has many workshops to offer to attendees again. Here is the link to today’s schedule.    https://guidebook.com/guide/119978/schedule/#date/06-07-2018

The morning will be spent listening to the experts at the HDSA Research Forum.

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

In the afternoon,many Workshops are available to select from.  Here are a few: 

  1. Benefits of Staying Connected with Your Center of Excellence
  2. HD Activity Center for Persons with HD
  3. HDSA Special Events and Fundraising to Catapult our Mission Work
  4. How to Effectively Manage the Motor Symptoms of HD
  5. Diagnosing and Managing JHD

From 6- 7  p.m., is the Gala Reception and dinner and dancing goes on until 1 p.m. The Gala brings the 33rd HDSA Annual Convention to a Close.

       

We Can Never Lose HOPE…….

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

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

HD Awareness

Memoir Heightens Huntington’s Disease Awareness

HDSA Northern California Chapter Convention/Education Day

I wrote and published the book, Watching Their Dance, for several reasons and the first reason was to heighten Awareness of Huntington’s Disease.

The book is a tool for others to use to create/heighten Huntington’s disease awareness. The story reads like a novel and appeals to a large audience, especially readers who enjoy a love story with a difficult challenge.  (It’s John and my love story while living in the shadow of HD).

To successfully fundraise for a rare, fatal, hereditary brain disorder, with no cure, like Huntington’s disease, creating awareness is vital.  How can someone be persuaded to give, if they know nothing about the cause (disease)?

So, I ask the many HD community folks who purchased the book, many thanks, to pass it on to someone who knows little about the disease.   What is Huntington’s disease?

I found this interesting article on 15 Way to Skyrocket Awareness for a Cause, and I’m going to implement a couple of the suggestions into my outreach plan.   https://www.youcaring.com/blog/2017/how-to-raise-awareness-for-a-cause

1. Organize educational events

2.  Host fundraising events      

3.  Set a world record                           

4. Be picture perfect

5. Host a video contest

6. Like and comment to win

Branding Your Cause

7. Be consistent

8. Design and distribute swag

9. Boost social media awareness

Content 

10. Produce content others find valuable        

11. Make informational pamphlets

12. Write a press release

Issue Challenges 

13. Make a viral challenge video

14. Challenge your coworkers

15. Take on a challenge

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

Photo by symphony of love on Foter.com / CC BY-SA

 

 

 

 

 

 

HD Awareness

“House” TV Series & Huntington’s Disease

   MAY IS HUNTINGTON’S DISEASE AWARENESS MONTH!

Every now and then, you will find a Huntington’s disease patient featured on a TV show, usually in a medical oriented show/soap opera, etc.  House is one such program, and there are others.  I’ve listed the three scenario’s that appeared on House. Actor Hugh Laurie stars.   https://en.wikipedia.org/wiki/House_(TV_series) 

#1. A seemingly fit and healthy personal trainer collapses while filming an exercise DVD, but her symptoms convince House she is hiding something – and gaps in her medical records increase his suspicions. Meanwhile, Thirteen begins a clinical trial for Huntington’s disease as her nerves begin to degenerate.      http://www.huntingtonsdiseasefoundation.org/ 

#2. The grumpy medic treats a 16-year-old girl who collapsed at her school’s Christmas pageant. He determines her liver is failing, but cannot fathom why. Meanwhile, Foreman and Thirteen grow closer during the trials for the Huntington’s disease drug.  https://www.wehaveaface.org/ 

#3. A man suffering chronic and severe pain makes an unsuccessful attempt to commit suicide. The grumpy medic agrees to take up his case, but is himself racked by intense pain in his leg. Thirteen receives help from Foreman while taking part in his Huntington’s disease clinical trial.  http://www.hdsa.org 

I’m really glad Huntington’s disease has come out of the closet; it’s another neurodegenerative disease like Alzheimers, Parkinson’s, ALS but there seems to have been a stigma attached to the disease.  http://www.neurodegenerationresearch.eu/about/what/ 

We Can Never Lose Hope……………………

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 format.

100% of the proceeds from Therese’s book sold in the U.S. will be donated to HDSA.  http://www.hdsa.org     Last December, Therese and John donated $9,015.00 to HDSA that was the profit from book sales since Therese published in April 2017.

#LetsTalkAboutHD

#HDAwarenessMonth 

The Marin Siblings

An Excerpt from “Watching Their Dance”

         May is Huntington’s Disease Awareness Month

Chapter 13 “A Genetic Marker”, page 113 

This chapter takes place in 1983 & 1984, which were two good years in so many ways for John and me, and Huntington’s disease, but turned tragic for Lora, John’s oldest sister. The Discovery of the HD Genetic Marker in 1983

Lora was in Starting Point in this scene, a drug/alcohol rehab center.

“Another issue weighed heavily on my mind, but I didn’t dare talk about it.  Because an early and prominent symptom of HD is depression, a person with Huntington’s can turn to alcohol as a way to self-medicate.  With all her other problems, Lora must have been terrified of having Huntington’s, because it wasn’t an abstract disease to her.  The memories of watching her mother’s struggle must have remained vivid in her mind.  

After John had attended four of Lora’s sessions, he came home with upsetting news. “Dave told the group that Lora’s hospital stay last year wasn’t about hepatitis B,’ I started nodding, ‘but the beginning of cirrhosis of the liver.’  

I gasped and my eyes starting filling with tears. “What did she say about me coming to her sessions? You told her I want to help, right?’ 

‘Yes, I asked her, Therese.’ He looked away. “She doesn’t want you there. She doesn’t even want me there, but I’m not going anywhere.  She’s so angry. I don’t think it would be good for either of you.'”

Read about Challenging Behaviors in Huntington’s disease 

From the above article:  “Substance Abuse or Dependence Includes alcohol or recreational drugs. Abuse or dependence on substances can mask and/or intensify behavior symptoms. May be used to “self-medicate” from the symptoms of HD. Interferes and/or disrupts daily life, social relationships, work performance, etc.”

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 format.

100% of the profits from the book is being donated to Huntington’s Disease Society of America (HDSA).

We Can Never Lose HOPE………….

#LetsTalkAboutHD  #HDAwarenessMonth

#HDSTRONG #HDSAFamily

 

 

 

 

HD Awareness

May is Huntington’s Disease Awareness Month

Tomorrow is MAY 1st, and the Huntington’s disease (HD) community kicks off a month of heightening awareness for this rare, genetic disease, which most people know nothing about.   http://hdsa.org/what-is-hd/ 

When I begin a conversation with someone about HD, I ask, “Do you know who Woody Guthrie is?”  If they say, “No”, I respond, “He’s a singer-songwriter, one of the most significant figures in American folk music who wrote the song, This Land is Your Land and he died of Huntington’s disease.   http://www.woodyguthrie.org/biography/biography1.htm    

Marjorie Guthrie, his wife, made him the HD poster child, after his death, for the organization she started,  “The Committee to Combat Huntington’s Disease” which evolved into Huntington’s Disease Society of America (HDSA) after her death in 1983.  http://www.hdsa.org   

History of HDSA   http://hdsa.org/about-hdsa/hdsa-history/             

What is Huntington’s disease?  I describe it to people as the cruelest disease on the planet because:

#1-it’s hereditary, so it can devastate families for generations;

#2-it is like having ALS, Parkinson’s & Alzheimers, with all their symptoms, at one time;

#3-there is no cure;

#4-there is no therapy;

#5-it’s progressive and people can struggle with it for 10-20 years;

#6-there is adult HD and Juvenile Huntington’s Disease (JHD);

#7-it can financially devastate a family because of the endless years of caregiving for a loved one.  

Today there are many organizations advocating for the disease and many researchers and scientists working toward a cure.  A few of them are:

Huntington’s Disease Society of America http://www.hdsa.org

Help4HD International  https://help4hd.org/

Hereditary Disease Foundation   http://www.hdfoundation.org/ 

Huntington’s Disease Foundation  http://www.huntingtonsdiseasefoundation.org/ 

WeHaveAFace  https://www.wehaveaface.org/

  

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 format.

100% of the proceeds from Therese’s book sold in the U.S. will be donated to HDSA.  http://www.hdsa.org     Therese and John donated $9,015.00 to HDSA that is the profit from book sales since Therese published in April 2017.

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HDSA

Scholarships to Attend HDSA National Convention June 2018

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

National Convention Scholarship– This scholarship is open only to first time Convention attendees who are not California residents. (California residents please see separate scholarship application.) Applicants must be 18 years or older as of January 1, 2018. Open to residents of the United States only.
Click here to Download Printable Application 
Click here to fill and submit the application online

California Resident Convention Scholarship- The intent of this scholarship is to help families and individuals who live in the state of California to attend the 33rd Annual HDSA Convention. The scholarship is open to any family member or caregiver who is affected by Huntington’s disease.

Click here to Download Printable Application 
Click here to fill and submit the application online

Deadline to apply for scholarships is April 4th, 2018.

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 format.

100% of the proceeds from Therese’s book sold in the U.S. will be donated to HDSA.  http://www.hdsa.org     Last December, Therese and John donated $9,015.00 to HDSA that was the profit from book sales since Therese published in April 2017.