HDSA San Francisco Bay Area AFFILIATE

A Charity That Can Use Your Help

Author Therese Crutcher-Marin

Do you know how many nonprofits there are in the United States?  I didn’t until I Googled it.  It blew my mind.

According to the National Center for Charitable Statistics (NCCS), more than 1.5 million nonprofit organizations are registered in the U.S.
This number includes public charities, private foundations, and other types of nonprofit organizations, including chambers of commerce, fraternal organizations and civic leagues.                                                                                          
Huntington’s Disease Society of America (HDSA) is one of the 1.5 million charities.   I’ve chosen to be involved with this charity because Huntington’s disease (HD) has impacted my life in a huge way.  My mother-in-law and three (3) sisters-in-law, Lora, Marcia and Cindy has all died from HD complications.  To learn more about HDSA, visit:   http://hdsa.org                                                                                          
I’m involved with the NEW HDSA San Francisco Bay Area Affiliate and we need volunteers in order to meet our mission. HDSA is dedicated to improving the lives of everyone affected by Huntington’s disease and their families.”
The SF Bay Area Affiliate Team works to improve the lives of HD families by organizing fundraising events which funds local services; i.e. University of California, San Francisco and Stanford University Centers of Excellence (HD clinics), support groups, and education days.                                                                                                                                                                               
We need volunteers!
If you are  interested in volunteering, email me at theresecrutchermarin@gmail.com   

 

Kindness

Overwhelming Act of Kindness

I blog a lot about kindness and the need for it in our world today.  On December 27, 2019, a fire broke out at an old hotel in Minneapolis Minnesota that had been converted to apartments for the homeless.  There was an outpouring of help for the 200 displaced by the fire.

“Those displaced from the apartments, many of them homeless with nowhere else to stay, were offered help helter-skelter as news broke about the fire and donations began pouring in. Buses were brought in to provide immediate warmth and temporary shelter. The Red Cross and the Salvation Army soon arrived to hand out blankets, food, water and baby wipes.”

Though there is much difficulty in finding these folks a new place to live, I was impressed by the community and how quickly they reached out to help.

To read the full article, visit:  http://www.startribune.com/drake-fire-brings-flood-of-donations-but-long-term-shelter-harder-to-find/566480042/

        

 

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 
HDSA San Francisco Bay Area AFFILIATE

2020 Welcomes the New HDSA San Francisco Bay Area AFFILIATE

Author Therese Crutcher-Marin

I’ve always welcomed a challenge in my life, my work, and in my volunteer efforts.  Living at risk with John for Huntington’s disease (HD) was the biggest challenge of my life, and, luckily we made it through the fire.  HD is a rare, fatal, genetic brain disorder with NO CURE.  When a parent has HD, each child has a 50/50 chance of inheriting this horrific disease.  For more information on HD, visit http://hdsa.org.

HD Advocate Amy Fedele

When a challenge presented itself to Amy Fedele, an HD advocate in the San Francisco Bay Area, and myself, we embraced it.  https://www.facebook.com/amy.fedelelucchese

 

The San Francisco Bay Area, with 7.1 million folks, does not have a Huntington’s Disease Society of America (HDSA) Chapter or Affiliate; 54 Chapters/Affiliates exist across the U.S.  The HDSA Northern California Chapter territory included the Bay area; their territory was huge and impossible to carry out HDSA’s mission in this part of the Northern California.  So, the new SF Bay Area Affiliate will work in partnership with them to fill in the gaps of service, To view the Chapters/Affiliates across the country, visit:  https://hdsa.org/about-hdsa/chapters-affiliates/

So, with that said, last year, Amy and I began the process to become a HDSA “Affiliate” with the help of Denny Cone, HDSA Regional Development Manager.  I wrote a Letter of Intent, filled out paperwork and submitted it to HDSA.   On October 3, 2019 we were granted the status of San Francisco Bay Area Affiliate and we begin operation today!

It’s a great New Year for the HD community and we are thrilled to have the first Affiliate meeting on January 11, 2020 at University of California, San Francisco Center of Excellence.

We Can Never Lose HOPE…………………

Visit the link to read about overcoming life’s challenges:https://www.tentree.com/blogs/posts/10-ways-to-overcome-lifes-challenges

 

 

 

 

Family

Merry Christmas

From John and myself. 

Have a wonderful Christmas with family and friends.  

We Can Never Lose HOPE

Family

Christmas Memories

We are just a few days away from Christmas and memories of Christmas past come flooding into my brain.

I found a few pictures from my childhood and posted them, they’re black & white which really shows my age.  I reminisce as I look at them and they bring a smile to my face.

Growing up, my parents always listened to the  Ray Conniff Christmas record.  I bought that same record, a few years back, only as a CD and it sure brings back memories as I listen to it.

Have a wonderful Holiday Season with Family and Friends.  

To listen to the Ray Conniff Christmas record, visit:  https://youtu.be/27lOcKkmXYM

Merry Christmas to All and to All a Good Night.

My mother holding me during my first Christmas

Me with older sister, Ellen

Christmas in 1976 when John and I were in college

Therese-Author

Angels Are All Around Us

There are always angels everywhere

Perhaps we only think to look for them at Christmas, when their wings can be seen, when their haloes glow with light

But they are always there

There in the quiet corners, there in the shadows, there in their ordinary clothes, and they are beautiful

Make room for the angels   

They will catch you unaware, and fill your heart in ways you never imagined


From my family to yours, Merry Christmas and remember to look for angels.  

 

 

From the Netflix series, “Call the Midwife”.

Huntington's Disease

What’s Your Wish This Christmas?

I love the Peanuts Gang and have since I was in 5th grade in 1965.  That’s the year the animated television special, A Charlie Brown Christmas, appeared on TV.  It was the first TV special based on the comic strip Peanuts, by Charles M. Schulz.

Also, that year my parents bought my three (3) sisters and me, an orange sweatshirt with the Peanuts Gang on the front.  I still have the sweatshirt in a storage bin in my garage.  I just cannot give it up with so many memories attached to it.

For my fifth grade Christmas play, we did a short version of A Charlie Brown Christmas.  These are great memories and I cherish them.

When I found the cartoon with Charlie Brown and Snoopy, I just had to blog about it.  This cartoon may mean different things to different people.  For me, “a cure” is for the horrific Huntington’s disease that stole John’s three (3) sisters, mother and aunts, uncles and cousins.  What is Huntington’s disease

To watch and listen to Vince Guaraldi Trio “Christmas Time is Here” (vocal version from A Charlie Brown Christmas) click on link:  https://youtu.be/SvK3jEXJFdg

From my family to yours, Merry Christmas and may your Christmas wishes come true! 

 

Caregiving

Caring for the Chronically Ill in America

On December 1, 2019, the Wall Street Journal printed an article that really hit home. 

Dr. Arthur Kleinman, professor of medical anthropology and psychiatry at Harvard Medical School, is the author of the article:

Treating Disease Is No Substitute for Caring for the Ill“.

“The American health-care system focuses overwhelmingly on curing acute problems.  It needs to do far more to provide ongoing support for patients with chronic maladies.

The U.S., in effect, has two health systems.  One addresses disease, the science of what makes us sick; the other addresses illness, the human experience of being sick.  Disease demands treatment, while illness calls out for care.”

40-50 millions of Americans act as family caregivers.  Included in those millions are caregivers for a loved one with Huntington’s disease (HD).  HD is a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Parkinson’s and Alzheimers at the same time.  There is NO CURE.  More on Huntington’s disease-hdsa.org   

Custodial Care, a non-medical care that helps individuals with their daily basic care, such as eating and bathing. Custodial care for an individual is generally recommended by authorized medical personnel, but providers of custodial care are not required to be medical professionals.

Custodial care at home is typically covered only under long-term care (LTC) insurance, not by Medicaid, even though home care is cheaper than a nursing facility.

Lora, Cindy, Marcia Marin

Unfortunately, for HD families, insurance doesn’t pay for custodial care, unless they have LTC, so family members provide the care for their loved one.  HD patients can live up to 20 years with the disease and need custodial care for years.  I for one can vouch for this as my two (2) sisters-in-law each struggled with HD for 17 years.  Luckily, my family was able to pay for private caregivers but not everyone can do this.

We Can Never Lose HOPE………..

Visit my author page and read about my HD journey.  https://theresecrutchermarin.com

More on Dr. Kleinman:  https://en.wikipedia.org/wiki/Arthur_Kleinman

 

 

 

 

Hope

Priscilla Chan and Mark Zuckerberg Want to Cure All Diseases by 2100

 

Last week, Gayle King, CBS Good Morning news, interviewed Mark Zuckerburg and his wife Priscilla Chan, Facebook leaders, about many topics. I watched some of the interview and, thankfully, saw the discussion that could impact the Huntington’s disease community around the world.

Their goal is to cure all disease diseases by 2100.

        They have committed to 3 billion dollars to achieve this goal.

To read about it, visit facebook-couple-commits-3-billion-to-cure-disease-1.20649

To watch the interview, click here:  https://youtu.be/OfjSLMiQG7U

I won’t be around, if you’re a baby boomer, maybe my great or great, great grandchildren will be on this earth.

After watching the interview, I got to thinking, “I wonder if Huntington’s disease (HD) is high on the list?”

I say this because I believe Huntington’s disease is the cruelest disease on the planet!

All diseases cause some level of suffering, but HD doesn’t just affect the patient, but everyone in the family and the suffering can go on for many years; my two (2) sisters-in-law struggled with HD for 17 years.    What is Huntington’s Disease?

I am a Huntington’s disease advocate, volunteering for Huntington’s Disease Society of America (HDSA), the premier nonprofit dedicated to improving the lives of everyone affected by Huntington’s disease and their families. http://HDSA.org

We Can Never Lose HOPE…

To learn more about my Huntington’s disease journey and the book I published to raise awareness, generated dollars to donate to HDSA, visit https://theresecrutchermarin.com

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is available on many book websites like Amazon.

Photo by jdlasica on TrendHype / CC BY