Family, HD Research

Kate Miner’s Sister Jenne Coler-Dark

Many of you may not know that Kate Miner, actress, musician, Huntington’s Disease (HD) Advocate has HD in her family.  Her mother, and two sisters tested positive.  Kate tested negative.  What-is-HD? 

Jenne Coler-Dark & her husband

Kate & her 2 sisters

Last year, when I was publishing my book, Watching Their Dance, I reached out to Kate requesting a book jacket comment.  She graciously agreed and her comment appears on the front cover. Kate and her husband are supporters of the HDSA FREEZE HD event that was held on Sept. 22, 2018 in Los Angeles.

A few days ago, I found this awesome film, The Race, that includes Jenne Coler-Dark’s HD story, Kate Miner’s sister and who is gene positive. Read Jenne Coler-Dark’s Story

The film is about a young, idealistic Huntington’s Disease researcher who comes face-to-face with three generations of a family devastated by the fatal, incurable disease she studies. For the scientist, who has never met anyone with Huntington’s Disease, the stakes of her research become real. For a Huntington’s Disease patient at the center of the story who is watching her mother sicken, fearing her own demise, and afraid for her two kids, it’s a mother’s plea – and a race against time  

To watch the film, please click on link below:

https://theaudienceawards.com/films/the-race-207129?fbclid=IwAR3qzCaijs6hOCgXkaK6VaHSG957KWs7HephWX9qOJK87U-J2m8JBBqqAMQ

  100% of the proceeds from the book are being donated to the nonprofit, Huntington’s Disease Society of America (HDSA). It’s available on many book websites like Amazon.com

We Can Never Lose HOPE……………………….

 

 

 

 

 

Love

Grief Is The Price For Love

When we LOVE, we don’t realize that at some point in our life, we will experience tremendous grief when losing that person.

Would you turn away from loving a person because of the pain you will experience?  I don’t believe so.

If you don’t open your heart to love, you will never know grief because grief and sorrow are the price we pay to LOVE. The death of someone you LOVE is one of the greatest sorrows that can occur.

“Every time we make the decision to LOVE someone, we open ourselves to great suffering, because those we most love cause us not only great joy but also great pain. The greatest pain comes from leaving…the pain of the leaving can tear us apart. Still, if we want to avoid the suffering of leaving, we will never experience the joy of loving. And LOVE is stronger than fear, life stronger than death, hope stronger than despair. We have to trust that the risk of loving is always worth taking.” — Henri Nouwen

Articles on the relationship between love and grief:

https://thriveworks.com/blog/grief-love-losing-someone-never-easy-focus-good/

https://themindfulnessapp.com/grief-is-the-price-we-pay-for-love/

We Can Never Lose Hope………

Therese’s book can be purchased on many book websites like Amazon.com

 

 

 

 

 

HD Advocates

Update on Trey Gray-Musician, Father & HD Advocate

Trey Gray, celebrity, talented drummer who has played with many famous musicians like Faith Hill, Reba McEntire and Brooks & Dunn is also a Huntington’s disease advocate.  He tested positive in 2003.

In 2017, Trey was kind enough to write a book jacket comment that appears on the back cover of my book, Watching Their Dance. His comment: “Tears, laughter, blessings, and hope…….an amazing story that will touch, and help, I pray, everyone who reads it”.   What is HD?

Trey is engaged to Jess Lucille who is also a musician in the StarHeart band.  They have a son, who is cute as a button.

To watch the Artist Spotlight interview with Trey, go to https://www.youtube.com/watch?v=rZGFROA-4yA#action=share

The picture above includes:  Chris Chapman, Joe BishopPaul Erdman and Trey Gray.

We Can Never Lose HOPE………..

    

100% of the proceeds from the book is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA). Available on amazon.com and many other book websites.

 

 

 

 

 

 

 

 

HDSA Fundraising events

TV Interview with Huntington’s Disease Advocates Therese Crutcher-Marin & Amy Fedele

Amy Fedele and myself were lucky to be on KXIP CBS Channel 5 San Francisco to promote the 2018 HDSA San Francisco Team Hope Walk (October 13, 2018). Thank you CBS, and Pat Rose, San Francisco publicist who donated her time to get us on TV!

Click here to watch the interview:  https://cbsloc.al/2CPiH5v

A picture of my nonfiction book, Watching Their Dance, was shown on the screen during our interview. 100% of the proceeds from the book is being donated to the nonprofit, HDSA.  My Author Website

To purchase book:   https://www.amazon.com/-/e/B06ZY85776

Huntington’s disease is a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Parkinson’s and Alzheimers disease at the same time.  There is NO CURE!  Only approximately 30,000 American’s have the disease and 10% of those cases are children with Juvenile Huntington’s disease.   What is Huntington’s disease 

We Can Never Lose Hope……….

Family, Thankful

My Family is Everything

I don’t know what I would do without my family; especially John.  My kids, Keith and Vanessa, are also terrific and stand right along beside me, along with their spouses, Fran and Scott.  Although I don’t say it enough to them, I have the best family.

I’m blessed and thankful to have these people in my life, knowing they will always be there for me and, in turn, I will always be there for them.  My love for them continues to grow along with the appreciation I feel for them.  why-family-is-not-an-important-thing-its-everything/

Since I’m a Huntington’s disease (HD) advocate, and an active volunteer with the Huntington’s Disease  Society of America (HDSA), I use HDSA’s hashtags,  #FamilyIsEverything and #HDSAFamily on my blog, Facebook wall, twitter, Instagram and Google+ posts all the time.  What is Huntington’s disease/

Give your family members a hug, forgive and remember, Family is Everything! 

 

 

              

 

 

 

Resources

Huntington’s Disease Online Support Groups

In the past few years, Huntington’s Disease of Society of America (HDSA) has been offering online support groups for those struggling with Huntington’s disease (HD) or living at risk.  I think it’s a great service to offer because not everyone in the U.S. has access to a  support group close to their home.  HD is a rare, fatal, genetic brain disorder that is like having ALS, Parkinson’s and Alzheimers at the same time.  There is NO CURE. http://www.hdsa.org

To participate in the group, please sign up.  Here is the link to do so:  https://www.supportgroupscentral.com/groups_

Melissa Billardi, HD advocate, Founder, President, CEO of HD Support & Care Network, offers a weekly call in support type group.  It is on Thursdays on See Me HD Group Call at 1:00 pm PT/4:00 pm ET   Join from computer:  https://PMDAlliance.zoom.us/j/769346544  

Or Telephone: Dial: +1-408-638-0968 (US Toll)
Or +1-646-558-8656 (US Toll)
Meeting ID: 769 346 544

Melissa’s Facebook page and HD Support & Care Network website:

https://www.facebook.com/Mbiliardi           http://www.hdscn.org/

We Can Never Lose HOPE………….

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

 

Taking Care of Yourself

The Color that Soothes Me: Purple

Do you have a color that soothes and relaxes you?  I’ve loved purple since I was a little girl and when I wear it, it makes me happy.  When John and I got married in 1980, my bridesmaids dresses were a soft lavender shade.  It’s hard to find purple in woman’s clothes, so when Vanessa, my daughter, and I shop, we’re both on the look out for anything purple.  My Aunt Trina sends me Lavender chamomile body wash and lavender mist spray to put on my pillow at night

Because of my love for Purple, Wednesday is my purple day and I post pictures with shades of purple on my Facebook wall.  https://www.facebook.com/therese.crutchermarin

“Violet signifies strength, peace and wisdom. It has the capacity to bring balance and make you feel inner peace:  Read more at:
7 Relaxing Colors and How They Can Affect Your Mood 

Enjoy these beautiful pictures and poignant quotes!

We Can Never Lose HOPE….. 

 

 

Hope

HOPE-A Powerful Emotion

When I decided to marry John, even with his unknown gene status for Huntington’s disease (HD), the cruelest disease on the planet with NO CURE, instead of worrying every minute of every day, I chose to cling to HOPE.  what is HD?

HOPE is a powerful emotion that gave me strength, so at night when I went to bed, I wrapped my arms around John and HOPE.  Both gave me the strength I needed and I lived with HOPE in my heart for 38 years. (I still have HOPE that one day there will be a cure for Huntington’s disease.)

HOPE also calmed my FEAR, another powerful emotion, that can consume your thoughts.  

When the world says, ‘Give up’ HOPE whispers,

                      ‘Try it one more time.’

In every book I sell, I write:

We Can Never Lose HOPE………………….

An inspirational love story while living in the shadow of Huntington’s disease.

The theme’s in the book are HOPE, UNCONDITIONAL LOVE and FORGIVENESS.

You can find the book on many book websites like Amazon www.amazon.com/Watching-Their-Dance-

HDSA Fundraising events

San Francisco Team Hope Walk October 13

Amy Fedele is the Coordinator for the SF Team Hope Walk. (with husband, Matt)

The Team Hope Walk program is Huntington’s Disease Society of America’s (HDSA) 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 HD and their families.  In 2018, 94 Team Hope Walks will be held across the U.S.

Huntington’s disease (HD) is a rare, fatal, genetic brain disorder that is like having ALS, Parkinson’s and Alzheimer’s at the same time.  There is NO CURE.  It slowly deteriorates a person’s physical and mental abilities and usually strikes during prime working years. 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

Please help in the fight against HD and Juvenile HD by supporting the Walk or becoming a Sponsor.  To register, http://www.hdsa.org/thwsanfrancisco or to be a Sponsor, please email Amy Fedele, Walk Coordinator at: hdsabayarea@gmail.com  Read Amy’s story:  Amy Fedele’s Story

 

We Can Never Lose HOPE………..

End-Of-Life Issues

Make Your Wishes Known

Author Therese Crutcher-Marin

Our society today doesn’t like to talk about end-of-life issues even though no one gets out of this life alive.  Since each one of us will the confronted with our own mortality, wouldn’t you want to control what happens to you at the end of your life?  You can document your wishes by filling out an Advance Health Care Directive or a Power of Attorney for Health Care.  John and I have a Power of Attorney for Healthcare in our Living Will that our attorney created for us.

One way to have your family/friend abide by your wishes, when the time comes, is to have an Advance Health Care Directive form completed.  It’s not just having it filled out, it needs to be distributed to your family/friend who will be your advocate and in your medical chart at your doctors office/hospital.

An Advance Health Care Directive is a gift to your family.  Making end-of-life decisions ahead of time will lower anxiety, and allow the doctor to design a plan of care based on the directive.

To read about directives go to:

Express your Healthcare Wishes with an Advance Directive  

and Advance Care Planning

A copy of an Advance Health Care Directive from the California Hospital Association can be downloaded here:

https://www.calhospital.org/sites/main/files/file-attachments/form_3-1_-_english.pdf

We Can Never Lose HOPE…..