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#HDSA

Family

Genetic Information Non-Discrimination Act-GINA

In 1988, when two of my sisters-in-law, Lora and Marcia Marin were struggling with Huntington’s disease (HD), I became obsessed with increasing John’s Life insurance.  He was employed by Placer County and as a manager he received a free $50,000.00 life insurance policy. What is HD

To protect my family and to lower my anxiety, I felt $50,000.00 was inadequate, because of John’s at risk status for HD, and set my sights on securing a private life insurance policy for John.

Well, I wish GINA had been established at that time because I applied to ten (10) Life Insurance companies and John was denied by all of them.  The Genetic Information Non-Discrimination Act (GINA) created new protections against the misuse of genetic information by health insurance companies and employers.  Go here for FAQ’s about GINA.  what-is-gina-and-when-does-it-take-effect

I remember the question that was on the applications that was the cause the denial:  “If a parent is deceased, what was the cause of their death?”  I wrote, “Huntington’s disease”.

We Can Never Lose HOPE……..

             

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is available on Therese’s author website http://www.theresecrutchermarin.com and many book websites like Amazon

 

Family, Forgiveness, Hope, Kindness, Mindful, Thankful

A New Year Has Begun

Happy New Year  To My Fellowman Around The World!

On this day, the beginning of the new year, I want to take a moment to be thankful, and to remind myself to continue having forgiveness & hope in my heart, and to keep kindness and mindfulness in my everyday activities.

2019 is here and what a great year 2018 was for my family as my father is healthy at 89 years old and my sisters and children are also healthy and happy.  It has been a joyous year for the Huntington’s disease community; with the positive outcome of Ionis HTTRx drug and Genentech/Roche moving quickly to setup clinical trials around the world for the now HG6042 drug. Ionis HTTRx program and its future

My sister, Jen, and our dad

John & our children & their spouses

To learn about Genentech/Roche plan, click below on video.

We Can Never Lose HOPE…….

 

Therese is the author of Watching Their Dance, an inspirational love story while living in the shadow of Huntington’s disease.  It can be purchased on her Author Website or Amazon  

100% of the profit from the book is being donated to the nonprofit Huntington’s Disease Society of America (HDSA). December 2017, she donated $9,015.00 to HDSA which was the profit from 2017 book sales.

On Writing

“Show, Not Tell” Your Story

I offer this blog to my fellow writers.  If you have heard the phrase,         “Show Not Tell” your story, then you are on the right track.  This phrase suggests writers create scenes that allow readers to visualize what is occurring in the story.  Describe to the reader in detail the room, the colors, the smells, the weather, the emotions of the people involved, etc.

Showing vs. Telling Sentences  Article.

When Pam and I were working to improve my manuscript, she was my editor, enhancing scenes was a priority so the reader felt like they were a fly on the wall watching the story unfolded.  3 Ways to Show, Not Tell Your Story

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 San Francisco Team Hope Walk on October 13.  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. 

Therese and John donated $9,015.00 to Huntington’s Disease Society of America (HDSA) which was the profit from her book since she published in April 2017.

#LetsTalkAboutHD              #WeCanNeverLoseHope 

#HDAwarenessMonth        #WatchingTheirDance

Family

Feeling Alone

People ask me, “Why do you donate your time to help in the fight against Huntington’s disease (HD) when it will not ever affect your family again?” 

Yes, John dodged the Huntington’s disease bullet, he didn’t inherit the mutated huntingtin gene like his three (3) sisters and mother and for that we are so grateful.  http://hdsa.org/what-is-hd/#risk

I do it because I don’t want anyone to feel alone like John and I did when Lora, Marcia and Cindy were struggling with the disease process. In the 80″ & 90″s support groups were non existent and there were very few neurologists knowledgeable about HD.

Today, there is so much support, information, and neurologists available to families so I spend much of my time on social media getting the word out.  Facebook has HD support groups you join and there are many online support groups facilitated by social workers. http://hdsa.org/osg/   http://www.hdscn.org/     https://help4hd.org/

So, don’t give up!  Help is out there!

We Can Never Lose HOPE…………….

 

 

 

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……

HDSA

HDSA Convention-Leadership Day-June 7, 2018

Huntington’s Disease Society of America Annual Convention Continues: 

Day 1.  Leadership Day, for those in HDSA Chapters with Leadership roles, is today, June 7th.  It will start off at 8 a.m. with a Continental Breakfast and at 9 a.m., Nancy Rhodes, Director of Field Development & Operations, and Bill Kline will be our first speakers.   http://hdsa.org/about-hdsa/annual-convention/

After the meeting, at 6 p.m., there will be a Team Hope Walk for all to participate in.  (You will receive a Team Hope Walk t-shirt.)

Then, the Convention Welcome Reception will begin at 7 p.m. and the Exhibit Hall will be open.  (HDSA is graciously allowing me to sell my book again this year).

 

We Can Never Lose HOPE…………

HDSA Northern California Chapter Convention/Education Day

 

 

 

Grief

Anger, a Natural Reaction to Grief

I have to admit anger started seeping out of my pores when Cindy became symptomatic.  She was the third sister-in-law to fall prey to this monster; Huntington’s disease.  When I started noticing symptoms, I was in denial and ignored it; I didn’t even talk to John about it, but soon it was hard to disregard. As she declined, my anger got worse; I just wanted to take a baseball bat to the monster and make it hurt like I hurt.  What is HD

For those experiencing this emotion, know, anger in itself is a natural reaction to grief and loss; it’s a normal part of grief.  If you are feeling this way, please seek help from a counselor and/or attend a Huntington’s disease support group. 

Article on Grief and Loss             Article on Anger in Bereavement  

Article-griefrecoverykit.com/    3-ways-to-work-through-the-anger-stage-of-grief/

The book, Griefland is written by a friend of mine, it’s a great book, and it’s available at  https://www.lulu.com/shop/search.ep?keyWords=griefland&type=

Unfortunately, Huntington’s disease causes many losses to a person with the disease; i.e., loss of independence, loss of being in control, loss of a job, etc. Watching a loved one decline may cause anger issues with the care partner/family.

I feel blessed that by writing my story, it was a healing journey, I was able to release the anger I harbored toward HD.

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………….

                        May is Huntington’s Disease Awareness Month

#LetsTalkAboutHD  #HDAwarenessMonth

#HDSTRONG #HDSAFamily

 

 

 

 

HDSA Northern California Chapter

May is Huntington’s Disease Awareness Month

Yesterday, HDSA Northern California Chapter held its Annual Huntington’s Disease Education Convention supported by a grant from TEVA Pharmaceuticals.  The grant helps the Chapter to continue the HDSA Mission:  To improve the lives of everyone affected by Huntington’s disease.            http://www.tevapharm.com/ 

The Chapter loves to offer the Convention to the HD community in May because:

May is Huntington’s Disease Awareness Month!  

It was a fun, positive, informative day for the attendees and the Board of Directors are thrilled with the turnout.   http://northernca.hdsa.org/ 

Here’s some statistics on the day.

Registered online:  187+ 22 vendors/speakers
 
Workshops & number of attendees:
Managing behaviors:                60
Advocacy and Clinical Trials:    31
At-risk Discussion:                     6
HD and the family:                    12
Yoga:                                           5
(Total 114)
HD 101 (genetic testing):                              36
Gene Positive: now what?:                           30
Increasing your support system:                  40
Advanced directives and power of attorney:16
(Total 122)
      My table at the Convention                Heidi Ramos, Amy Fedele, Katie Jackson
                

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 the convention.  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. 

Therese and John donated $9,015.00 to Huntington’s Disease Society of America (HDSA) which was the profit from her book since she published in April 2017.

Kindness, Love

The Hero’s In My Life

Like many people, I have several hero’s that I hold in high regard.  Most of them, for me anyway, are women who have inspired me, taken chances and usually succeeded, stepped outside their comfort zone to achieve their goal(s). 

#1. Elisabeth Kubler-Ross-A Swiss-American psychiatrist, a pioneer in near-death studies and the author of the groundbreaking book On Death and Dying (1969), where she first discussed her theory of the five stages of grief, also known as the “Kübler-Ross model”.   https://en.wikipedia.org/wiki/Elisabeth_K%C3%BCbler-Ross 

Since I worked in hospice for 10 years, I’m grateful to her for starting the conversation on dying and how hospice can assist the dying to have the highest quality to their life until they pass.  She created the first hospice house in England, and the hospice idea moved to the U.S. in the 1960’s.

#2.  Mother Teresa-Known in the Catholic Church as Saint Teresa of Calcutta, was an Albanian-Indian Roman Catholic nun and missionary. This woman emits unselfishness, kindness, love and hope.   https://en.wikipedia.org/wiki/Mother_Teresa  

#3.  Lora, Marcia and Cindy, are my hero’s not just because they had Huntington’s disease; it was their attitude towards life, and how precious it was to them despite their circumstance.  Also, they were the kindest, most generous, positive women I’ve ever met.   What is Huntington’s disease 

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 is being donated to HD organizations around the world.

We Can Never Lose Hope………………..

 

About Author, HD Awareness

Writing for a HD Cure

People write books for many reasons.  In my instance, I wrote Watching Their Dance with several goals in mind. when book sales benefit a cause

Recognizing the goals or reasons for writing a story, I believe, will assist a writer with marketing their book, because it helps  identify their audience.

My goals/reasons for writing, Watching Their Dance:

  1. Create a tool to heighten awareness of Huntington’s disease
  2. Communicate the truth of what HD families go through for generations when HD is in their family
  3. Give the Huntington’s disease community around the world a way to generate money for their HD organization, i.e. HDSA, Huntington’s Society of Canada, Huntington’s Disease Association, etc., by purchasing a copy and telling others about it
  4. Donate the profit from book sales to Huntington’s Disease Society of America (HDSA)
  5. Contribute to the fight against HD monetarily that brings us closer to a cure or therapy  
  6. On a personal level, I wanted to heal from the loss of my 3 sisters-in-law, who had HD, and writing the story was therapeutic
  7. Honor Lora, Marcia and Cindy, and create a legacy
  8. Ultimately, I wanted to help find a cure for the cruelest disease on the planet

After setting my goals, the Huntington’s disease community around the world became one of my audiences. I have others that I will share in another blog.

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.