Browsing Tag

#WeCanNeverLoseHope

Huntington's Disease

Sessions Available from the 36th Annual Huntington’s Disease Society of America Convention

Hi, I’m Therese Crutcher-Marin, Huntington’s Disease Advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an Author.

Huntington’s Disease (HD) is a rare, fatal, genetic brain disorder that has the symptoms of ALS, Alzheimers and Parkinson’s disease at the same time.  There is NO CURE.  41,000 Americans are symptomatic and approximately 200,000 live at-risk of inheriting the mutated huntingtin gene that causes the disease.

If you were unable to watch sessions presented at the virtual Huntington’s Disease Society of America (HDSA) Convention last June, that you wanted to attend, 49 sessions were recorded.  Here’s a few of the sessions. 

Juvenile HD 101

Clinical Trials Part 1

SSDI, SSI, DISABILITY, HEALTHCARE PLANNING FOR HD

TESTING POSITIVE ACCEPTANCE TIMELINE: THE ROLLERCOASTER RIDE OF ACCEPTING AND LIVING YOUR LIFE

FAMILY PLANNING WHEN HD IS IN THE FAMILY

To see all the sessions, please go to 36TH ANNUAL CONVENTION 

36th Annual Convention Welcome and Keynote from HDSA on Vimeo.

 

 

 

 

We Can Never Lose HOPE……

Please make a donation to the nonprofit, Huntington’s Disease Society of America, to help fight HD.

HD Awareness

What is the Huntington’s Disease Advocacy Caucus?

Jennifer Simpson, Senior Manager of Advocacy and Youth Programs at Huntington’s Disease Society of America is leading the HD Advocacy Caucus.  HDSA San Francisco Bay Area Affiliate has one board member on the Caucus who reports to the SF Affiliate Board at the monthly meeting.

Mission of the HD Advocacy Caucus:   

  • To engage and create more advocates in order to change public policy to improve the lives of individuals and families living with Huntington’s disease (HD) at the Federal and State levels

What do we do:

  • Raise awareness about HD-related legislation
  • Advocate for HD-related legislation by engaging with US legislators
  • Recruit, activate and train advocates

Goals: 

  • Pass legislation that facilitates access to care and/or improves the lives of people living with HD
  • Increase the number of legislators educated about HD and engaged with the HD Community
  • Advocate for HD-related legislation by engaging with U.S. legislators
  • Pass the HD Parity Act 

What are we working on:

  • Passing the Huntington’s Disease Parity Act, advocating for increased access to telehealth services through the Covid-19 Pandemic, Strengthening GINA
  • Training and Engaging Advocates like you so you can engage your US legislators in the fight to improve the lives of individuals and families impacted by HD

We Can Never Lose HOPE……

Thankful

My Grateful Heart

To say “I’m grateful” is an understatement, and quite frankly, there isn’t a word that truly expresses the thankfulness I carry in my heart everyday.

Why am I appreciative?  In 2016, my husband, John, decided he wanted to to be genetic tested to find out his gene status for Huntington’s disease (HD).  Since HD is genetic, a negative test result meant he could not pass the mutated gene on to his children.

Our daughter Vanessa Garrett

Fast forward to 2021.  In February, our son, Keith, and his wife, Fran welcomed their first child, our first grandchild, into a family FREE of HD.

 I volunteer for the nonprofit, HDSA, and their Vision  Statement is, “A World FREE of HD“.

For 38 years, I worried about John and our children, praying they would be spared.  Now, I sleep soundly at night and thank the Higher Power for this gift.

Not every HD family is as lucky as mine, so now I pour my energy into supporting HD families in the San Francisco Bay Area by being the Chair for the Huntington’s Disease Society of America (HDSA) San Francisco Bay Area Affiliate.  

We Can Never Lose HOPE…

Visit my HD Advocacy/Author Website:  [email protected]

Please make a donation to HDSA and help in the fight against his brain disease that has NO CURE.  HDSA donation page

 

 

 

 

 

 

 

 

Huntington's Disease

Prevalance of Huntington’s Disease

There are approximately 7,000 rare diseases in the world and Huntington’s disease (HD) is one of them. National Organization for Rare Disorders

Author Therese Crutcher-Marin

To truly understand the rarity of HD, you just have to look at the numbers.  It’s staggering how rare HD is around the world.  Information on Huntington’s disease

The prevalence of Huntington’s Disease (HD) has been reported to vary with ethnicity and geographical location, confirming that demographic differences influence the number and composition of individuals with HD.  Since HD is believed to have major origins in Northern Europe, it is not surprising that populations of Northern European descent are recorded as having the highest prevalence of HD in the world.

In the United Kingdom (UK) there are 12.4 per 100,000 persons or 1 out of every 8,065 individuals may be affected with HD.  Huntington Study Group

Other countries where Huntington’s is particularly prevalent include Ireland (10.6 per 100,000); Norway (6.7); Italy (6.35); Australia (6.3); Denmark (5.8); Great Britain (5.4); Slovenia (5.2); and Sweden (4.7).  Huntingtons Disease News

N.neurology.org  estimated the true HD prevalence in the US to be 41,467, while the number of persons currently diagnosed is at least 21,331.

The percentage of Americans living with HD is .014 of the U.S. population.  We are a very small population and that’s why HD is considered a RARE DISEASE. (A disease is considered rare, when it affects less than 200,000 people)

Author Therese Crutcher-Marin Book Signing in Auburn CA

I’m a Huntington’s Disease Advocate, Chair for HDSA San Francisco Bay Area Affiliate, a blogger and author or Watching Their Dance. Watching the Dance Huntingtons Disease

To purchase the book, go to amazon.com/Watching-Their-Dance-Marrying-Huntingtons

100% of proceeds from book sales is donated to the nonprofit, HDSA.  http://hdsa.org

HDSA San Francisco Bay Area Affiliate Facebook page

Grief, HD Clinical Trials

Unfortunate News Regarding Two Clinical Trials Halted on Huntington’s Disease Drugs

Author Therese Crutcher-Marin

Dear Huntington’s Disease Community.                             

It’s been a very sad week for the Huntington’s disease community around the world with the halting the clinical trial on the Roche/Genentech drug tominersen.  To read the press release, click here:  https://hdsa.org/wp-content/uploads/2021/03/Tominersen-programme-update-Community-letter.pdf

Then yesterday, March 29, 2021, WAVE Life Science announced the decision to discontinue development of WVE-120102.   To read the press release, click here:  https://hdsa.org/wp-content/uploads/2021/03/HD-community-letter_PRECISION-results-final.pdf

 

As we grieve the loss of these once promising drugs, we must stay strong.  Remember, the HD community is

                   #HDSTRONG

                                                                                            and

    WE CAN NEVER LOSE HOPE……

I’m a HD advocate, Chair for the HDSA San FranciscoBay Area Affiliate , a writer and a blogger.

Visit my website at https://theresecrutchermarin.com

Hope, Mindful

COVID-19 Reminds Me To Be Mindful

Author Therese Crutcher-Marin

Needless to say, I don’t think anyone would disagree that 2020 was a year like we have never experienced before.  The number of Americans dying from Coronavirus is staggering.

  As of today, December 30th, 2020 over 339,000 Americans have died a horrible death and more than likely, died alone.

Since my family was at risk for the cruelest disease on the planet, Huntington’s Disease, a rare, fatal, genetic brain disorder with NO CURE, John and I always lived our lives MINDFULLY and TOOK NOTHING FOR GRANTED. What is Mindfulness?

This unprecedented year, has reinforced the importance to live in the moment, appreciate and enjoy the day.  California is in such a bad way with COVID-19 that John and I have not seen our children much this year.  I cherish them more and tell them I love them often.  Also, during the pandemic, I have felt closer to my sisters, nieces and nephews and believe I understand them more than I did before.

I pray this will be the last pandemic the world will have experience, for awhile, and I hope we have learned from it.

We Can Never Lose HOPE…

Author Therese Crutcher-Marin

I’m an Advocate for Huntington’s disease, a volunteer and Chair for the HDSA San Francisco Bay Area Affiliate.

Author Website I’m the author of the nonfiction book, Watching Their Dance:  Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s

On Writing, The Non Fiction Book

Three Years Ago My Dream Came True

Today, three (3) years ago my dream was fast approaching to become a reality; no longer did I have a manuscript, now I had a book (a proof copy of the book) that I could hold in my hand.  I remember going to the mailbox and taking the package out of the mailbox, walking back into the house, my hands shaking, afraid to open it, and my heart pounding in my chest.  John said, “Aren’t you going to open it, Therese?”  It was surreal holding Watching Their Dance and reading the words I had labored over for so many years.   Amazon http://amazon.com/author/theresecrutchermarin

For seven years, I’d traveled on an unfamiliar road that excited me; learning and improving my writing skills, finding camaraderie/support in fellow writers at Gold Country Writers Club and Sacramento Suburban Writing Club, and joining a critique group for three (3) years; I had to put on my tough skin to listen to their comments.

              

In 2015, after attending the San Francisco Writer Conference for the second time, I was ready to work with an editor to teach me techniques to improve my work.  Editor, Pam Feinsilber, taught me so much during those two years.  Many folks who have read the book have shared that they couldn’t put it down.

Pam’s Linkedin profile https://www.linkedin.com/in/pamela-feinsilber-08855b5/

On the March 10th blog, I’ll share my excitement on receiving the first order of my books!!

We Can Never Lose HOPE……

 

HDSA Fundraising events

Lagunitas Brewing Company Hosts a Fundraiser for Huntington’s Disease

A Heart 4 Huntington’s Beer Event at Lagunitas Brewing Company in Petaluma is the first fundraiser for the NEW HDSA San Francisco Bay Area Affiliate.  Purchase Tickets here
 
Mark your calendars for Monday, February 3rd from 5:30-8:30 p.m.  Bring your friends and family for a night to listen to live music and dance, have a beer(s), wind down from your Monday and help in the fight against Huntington’s disease (HD).  Food truck on site .  What is Huntington’s disease?  
Lagunitas Brewing Company is very generous and offers their venue free on Monday & Tuesday evenings to local nonprofits and they also supply the beer free.  https://lagunitas.com/taproom/petaluma
Also, a popular local Sonoma County band, with a large following, Poyntlyss Sistars Rockin’ Show 
Band are donating their time.   http://www.psband.net/
To purchase tickets, visit:   https://app.donorview.com/ljwEp 
Therese-Author

Miracles Happen Every Day

Sometimes we witness a miracle, a wonder, and overlook the meaning/purpose/impact that the experience can have on our lives. I think folks think of a miracle as a tremendous, jaw dropping event.  To appreciate these special moments in my life, I have changed my perception of what a miracle is.

An encounter I experienced this week at the Homeless Center was about a young man who I’ve seen many times.  I’m an interviewer, asking what services they need that day and I feel I’m a sounding board acknowledging their story, plans, and goals.  The young man,  who I have seen many times, shared that he had been sober for 14 days and that he was being admitted into a 90-day rehab program in a couple of weeks.  I consider this a miracle, so, I congratulated him, gave him a hug, and wished him well.

A while back, one of John’s cousin’s made a statement that made me ponder for a moment, and recognize that what happened in my life was indeed a miracle. The conversation was about divorces in our world today.  The cousin said, “It’s a miracle that you and John didn’t divorce with all you have been through”.  I had to agree.

                              

We Can Never Lose HOPE………….

I’m a Huntington’s Disease advocate having lost my three sisters-in-law to this horrific disease that has no cure.  100% of the proceeds from the book is being donated to the nonprofit, Huntington’s Disease Society of America (HDSA), to help in the fight against the disease.  What is Huntington’s disease:  http://www.hdsa.org

To purchase the book, go to https://www.amazon.com/Watching-Their-Dance-Marrying-Huntingtons.  It’s also available on many other book websites.

 

Hope

The Human Condition and HOPE

The Human Condition: “the characteristics, key events, and situations which compose the essentials of human existence, such as birth, growth, emotionality, aspiration, conflict, and mortality”.  It is a very broad topic which has been and continues to be pondered and analyzed from many perspectives.

I believe HOPE lives in each element of the Human Condition and HOPE lives in the heart of every Huntington’s Disease (HD) family member. HD is a rare brain disorder with symptoms of ALS, Alzheimers and Parkinson’s that no cure.  http://www.hdsa.org

Dr.’s Ed Wild from the U.K. & Jeff Carroll from the U.S.

John and I had HOPE for healthy children with a normal CAG count. HOPE keeps me emotionally grounded and passionate about offering HD information on all my social media platforms so no one fights HD alone. The HD community has  HOPE that researchers will find a cure/therapy.  HOPE keeps my heart open to forgiveness and HOPE allows me to use my mortality to keep me mindful everyday of all the all the blessings I have in my life. 

Lora, Cindy, Marcia Marin

HOPE is what John and I clung to, along with each other, as we watched his three sisters, Marcia, Lora, and Cindy, battle Huntington’s disease over a 24 year period of time. 

HDSA 2019 Convention

I embraced  HOPE, praying everyday John didn’t carry the mutated huntingtin gene.

We must remember, there is power in the emotion of HOPE that can help us through tough times.  Read about /the-power-hope  

 

“The road that is built in HOPE is more pleasant to the traveller than the road built in despair, even though they both lead to the same destination.” — Marion Zimmer Bradley, The Fall of Atlantis