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…..

 

HD Clinical Studies

Good News for the Huntington’s Disease Community

On September 16, the Huntington’s disease community received the news they have been waiting for.  Roche & Genentech: one company, two names, announces its plans to begin the clinical trial on the drug RG6042 (formerly known as IONIS_HTTRx).

The Ionis-HTTRx drug is an antisense therapy. It targets messenger RNA, a molecule that is an intermediary between DNA, the cell’s genetic material, and the huntingtin protein. Cells use the message as a template to produce the protein. It is designed to stick to a faulty HTT gene’s messenger RNA, reducing the amount of abnormal huntingtin protein the gene generates.

Huntington’s disease (HD) is like having Alzheimer’s, Parkinson’s and ALS at the same time.  There is NO CURE and it affects children and adults.

Update on RG6042 (formerly known as IONIS-HTTRx)

Huntington’s disease global development programme: Two clinical studies to begin by end of 2018

Dear Global Huntington’s Community,

Thank you for your ongoing support and interest in the investigational medicine RG6042 for Huntington’s disease (HD).

Over the past months we and our partner Ionis Pharmaceuticals have been heavily engaged with communities around the world (patient groups, medical professionals, Health Authorities and payers) to collaborate and build the RG6042 global development programme and upcoming studies. We are eager for RG6042 to advance into further clinical development. In addition, as announced last month, the European Medicines Agency granted RG6042 PRIME (“PRIority MEdicine”) designation, which provides promising medicines enhanced interactions with the agency and the potential for accelerated evaluation.       Read the full article here

Article from HDBuzz.net   Roche announces details of its ‘pivotal’ huntingtin lowering study 

Article from huntingtonsdiseasenews.com  https://huntingtonsdiseasenews.com/2018/09/24/roche-announces-2-clinical-studies-potential-huntingtons-therapy-rg6042/

 

Author Therese Crutcher-Marin

We Can Never Lose Hope……….

 

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

The Woody Guthrie Family

Anna Canoni-Marjorie Guthrie’s Granddaughter

Anna Canoni, granddaughter of Woody and Marjorie Guthrie, spoke at the 2018 HDSA Annual Convention in Los Angeles CA last June.  Woody had Huntington’s disease (HD). Anna’s a great speaker and I was inspired by her talk about her grandmother, Marjorie Guthrie who is on my hero list. HD is a brain disease that is like having ALS, Parkinson’s and Alzheimers at the same time.  There is NO CURE.

History on Marjorie Guthrie:   http://hdsa.org/about-hdsa/hdsa-history/

Anna Canoni is 3rd from the left & Dr. Nancy Wexler is on the far left

Amy Fedele, NorCal Chapter Board member with Anna

I first met Anna last summer when John and I were on a Midwest book tour promoting my nonfiction book Watching Their Dance. We attended the Woody Guthrie Folk Festival in Okemah Oklahoma and some of the Guthrie family were there.  I spoke with Anna and she purchased a copy of my book.

Left to right: Anna, her mother Nora Guthrie, Louise Vetter and Dr. Nancy Wexler

We Can Never Lose HOPE……………..

Therese is donating 100% of the proceeds from her book to Huntington’s Disease Society of America (HDSA). In December, John and Therese gifted $9,015.00 to HDSA which was the profit from 2017 book sales.  Please support this cause by purchasing a copy.

Amazon: Amazon

Kindle: Kindle

B & N: barnesandnoble.com

Nook:  barnesandnoble.com