Browsing Tag

#HDandJHDWarriors

Forgiveness

Learning to Forgive

Author Therese Crutcher-Marin

I’m currently in a situation where forgiveness would allow me to move forward.  But, I’m stuck and having a hard time forgiving because I don’t understand why it happened, it makes me angry, it indirectly hurting other folks and it’s counter productive.

I talk about kindness and forgiveness on my personal Facebook wall quite often, so at this time, I’m working on not just “Talking the Talk” but “Walking the Talk”.  

THE POWER OF FORGIVENESS – AND WHY IT’S HARD   https://www.powerofpositivity.com/

“The act of forgiveness may just be the single most powerful antidote for the pain caused by others.

Forgiveness does not mean that you “forget it and move on.” Nor does forgiveness mean that you absolve the person of their actions.

Forgiveness, instead, is choosing to compassionately release the desire to punish someone or yourself for an offense.

Yes, forgiveness is a choice. Yes, you can forgive yourself. But here’s the thing: while we may accept these statements on the surface, we often have trouble following through on the act of forgiveness – be it forgiving ourselves or someone else.”

We Can Never Lose Hope………..

 

 

 

 

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

HDSA Northern California Chapter

The Nonprofit Dear to my Heart

John and I have been connected to the Huntington’s Disease Society of America (HDSA), a nonprofit dedicated to improving the lives of anyone affected by Huntington’s disease (HD) for many years. 

Shana Verstegen with her mother who had HD.

It began long ago, 1978, when John’s family secret was discovered; his mom had HD.  I’ve received newsletters and info from them for over 20 years and we have donated to the organization regularly as did John’s father.  http://www.hdsa.org

So, I’m shouting out about the HDSA Northern California Chapter’s fundraiser on Sept. 8th, the Sacramento Team HOPE Walk.  John and I have created “The Marin Team” and want to raise $1,000.00.   Here’s the link to register for the Walk or to make a donation to the event.  Any dollar amount is helpful in the fight against HD. (HD is a fatal, genetic brain disorder that affects children & adults & there is no cure. It’s like having ALS, Parkinson’s & Alzheimer’s at the same time.)   http://www.hdsa.org/THWSacramento

Another link directly to “The Marin Team” page: https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.participant&participantID=44954  

 We Can Never Lose Hope……

About Author, Family

Knowledge is Power

In January of 1988, after Vanessa was born, John and I decided that I wouldn’t return to work and stay home for a couple of years while the kids were young.   John was making good money at Placer County, and we had money in our savings account, so I was comfortable living on one paycheck. A Walkthrough Guide to Panic Disorder  

At the time, I had two sisters-in-law, who lived locally, challenged by Huntington’s Disease (HD); Lora, severely depressed and drinking herself to death and Marcia, officially diagnosed at UC SF Medical Center two years earlier.  What is HD A few months after I resigned from my management job in Sacramento, I began having panic attacks.  John’s unknown gene status weighed heavily on my mind.  A Walkthrough Guide to Panic Disorder   

To ease my anxiety, I decided to pursue a Masters degree in Healthcare Administration.  Additional education, I felt, made me more marketable, and would replace time lost in the workforce.  I believe knowledge is power and as I studied I became confident that I would secure a job at our community hospital in Auburn, CA which I did in 1991.

The Sacramento Team HOPE Walk is Sat., Sept. 8, at the River Walk Park in Sacramento. To register or make a donation to the event, go to: http://www.hdsa.org/THWSacramento 

 

 

 

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

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