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Center of Excellence, HDSA

There are Huntington’s Disease Experts Across the U.S.

When my three (3) sisters-in-law were struggling with Huntington’s disease (HD), in the 1990’s, there were few neurologists who were experts in Huntington’s disease and other movement disorders.

Today, there are 54 Huntington’s Disease Society of America (HDSA) Centers of Excellence across the U.S. with doctors specializing in movement disorders like HD.  The HDSA San Francisco Bay Area Affiliate has partnered with two local Centers of Excellence, Stanford and University of California San Francisco Medical Center, to heighten HD awareness so HD families can find their way to these HD clinics where they will have support from an interdisciplinary team.

At Stanford Center of Excellence, two compassionate doctors, Dr. Sharon Sha and Dr. Veronica Santini, are Co-Directors of the  Huntington’s Disease and Ataxia Clinic and both are movement disorders specialists.

At University of San Francisco Center of Excellence Huntington’s Disease Clinic, has three expert neurologists, Dr. Michael Geschwind, Dr. Alexandra Nelson, Dr. Carmen Dietiker to support the San Francisco Bay Area HD community.

We Can Never Lose HOPE……   

Author Therese Crutcher-Marin

I’m a Huntington’s disease (HD) advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author.  Visit my website and learn about HD:  https://theresecrutchermarin.com

 

 

January 11, 2022 by
HDSA

THE 36TH ANNUAL HDSA CONVENTION GOES VIRTUAL!

Author Therese Crutcher-Marin

At the end of January Huntington’s Disease Society of America (HDSA) sent a survey to individuals who attended recent HDSA Annual Conventions to collect important feedback as they planned the 36th Annual HDSA Convention scheduled for Spokane, Washington this June.  What is HD?

After HDSA reviewed the survey results, working with the Convention host hotel, and consulting Washington State guidelines (current and projected) related to events, HDSA have made the difficult decision to once again host the 36th Annual Convention virtually. So, mark your calendars to join HDSA virtually on June 10th-13th, 2021.  https://hdsa.org/news/the-36th-annual-hdsa-convention-goes-virtual/

As much as HDSA would have loved to have been in Spokane with all of us in June, the health and safety of HDSA families remains their top priority. Plans are already underway for another world-class virtual event which will reach more people around the globe than ever before and will ensure that families around the world have free access to our incredible HDSA Annual Convention program.

Please visit https://hdsa.org/about-hdsa/annual-convention/2020-2/ to see the programs presented at the Virtual 35th Annual HDSA Convention. 

We Can Never Lose Hope…..

My HD Advocacy and Author website is:  https://theresecrutchermarin.com

 

March 16, 2021 by
HDSA, HDSA San Francisco Bay Area AFFILIATE

Make An End of Year Donation to Huntington’s Disease Society of America

Author Therese Crutcher-Marin, HD Advocate

I’ve been blogging for five (5) and for the first time I’m asking American’s, directly from my heart to yours, to donate to the nonprofit, Huntington’s Disease Society of America.  HDSA Organization  HDSA is a small nonprofit, 90% volunteer based, and no less important than the American Cancer Society, MS Society, Alzheimer’s Assoc. and Parkinson’s Foundation.  Huntington’s Disease (HD) families suffer like families of these diseases.

HD is one of 7,000 Rare Diseases in the world with NO CURE.  In the U.S., HD affects a small population; approximately 41,000 Americans live the disease and 200,000 live at risk.  I’m a volunteer and Chair for HDSA San Francisco Bay Area Affiliate, having lost my three (3) sisters-in-law to HD complications.  

I’m reaching out to you because it has been an unusual year with the pandemic which has affected everything in our lives.   Please consider making your year-end donation to HDSA so the nonprofit can continue supporting Huntington’s disease (HD) families across the U.S.  DONATE TO HDSA

Resources/programs funded by HDSA are: 50 Centers of Excellence (HD) clinics, local HD support groups, Disability Chats, Telehealth Program, National Youth Alliance Program, education and research.  HDSA also funds two yearly fellowships, Berman Topper Fellowship   Donald King Summer Research Fellowship , and the Human Biology Project.

HDSA has high ratings as a nonprofit.  Please see HDSA’s Charity Navigator ratings.

To make a donation, please visit:  HDSA Donation Page  

Thank you in advance for your generosity.

Below are HDSA accomplishments:

We Can Never Lose HOPE……………

 

 

 

 

December 28, 2020 by
HDSA

HDSA Virtual 35th Annual Convention

When COVID-19 became a reality, around March 11th, 2020, it changed so much in our daily lives and forced us to do things differently, like changing a fundraiser/event/convention to VIRTUAL events.  Also, Huntington’s disease families had grave concerns how the virus would affect their loved ones living with Huntington’s disease.

The 35th Annual Huntington’s Disease Society of America Convention, that I usually attend, was switched to a VIRTUAL event, and redesigned in a matter of about 30 days! It was amazing at the speed HDSA changed it to Virtual.

John and I were looking forward to traveling to New Orleans, that’s where the convention was supposed to be held, because we usually add on two weeks for a vacation. What I missed most of all by it being virtual, were the hugs from friends and reconnection  with friends who we look forward to seeing each year at the convention.

HDSA did not disappoint and I commend them for offering the convention for free which was a wonderful gift to global Huntington’s disease community.  The sessions offered were timely, uplifting, and informative especially on Saturday, June 6th, with the updates on clinical trials.

HDSA recorded every session and they will be available for viewing from this link in a couple of weeks:  https://hdsa.org/about-hdsa/annual-convention/

Here are few of the slides on information from Roche/Genentech Article on Antisense Therapy on tominersen  and WAVE Life Sciences Wave-Life-Sciences that was presented.

Dr. Jeff Carroll and Dr. Ed Wild lead a session, “Ask the Scientist Anything”

 

 

 

 

  

We Can Never Lose HOPE…………

 

June 9, 2020 by
HDSA

U.S. Nonprofits Adjust Fundraising Activities During Pandemic

“The coronavirus pandemic is forcing local nonprofits and charities to get creative with how they raise money. The charities are willing to make the adjustment to continue helping the community.”

To read the full article on this topic, visit: local/nonprofits-making-adjustments-to-raise-funds-amid-pandemic-concerns

The nonprofit my family supports, Huntington’s Disease Society of America (HDSA) is just one of the organizations making changes in their fundraising activities. Most HDSA Chapters/Affiliates, there are 100 Team Hope Walks across the U.S., are changing their Team Hope Walk, HDSA’s grassroots fundraiser, to a virtual event as is their Annual Convention on June 4-7, 2020.  Sign up for Virtual HDSA Annual Convention; it’s FREE:

                     

Please consider HDSA when making a donation to a worthy cause.  Huntington’s disease is a rare, fatal, genetic brain disorder that has symptoms like ALS, Parkinson’s and Alzheimers.  10% of all Huntington’s disease (HD) cases are children with Juvenile HD. There are 41,000 symptomatic Americans and approximately 200,000 that are at risk for HD.  There is NO CURE.  HDSAwebsite

Therese’s Author Website https://theresecrutchermarin.com

Therese selling books at the Woody Guthrie Folk Festival in Okemah OK

I’m donating 100% of the cost of my book, Watching Their Dance, to HDSA.  Since I published, three years ago, I have donated over $15,000.00.  It’s available on many book websites in new and used.  Amazon.com/Watching-Their-Dance    barnesandnoble.com/w/watching-their-dance

We Can Never Lose Hope….

May 15, 2020 by
HDSA, Huntington's Disease

What is Huntington’s Disease? A New Video

For more information and resources, please visit http://www.HDSA.org. The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by Huntington’s disease. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today, hope for tomorrow for people with Huntington’s disease and their families.

In the battle against Huntington’s disease no one fights alone. At HDSA, family is everything.

#HuntingtonsDisease #LetsTalkAboutHD #HDSAFamily #HDSA #Huntingtons #Disease #Brain #HD

 

Author Therese Crutcher-Marin, HD Advocate

To learn about Therese, visit her Author Website: https://www.theresecrutchermarin.com

We Can Never Lose HOPE….

April 29, 2020 by
HDSA

Chat About Disability with HDSA

Getting approved for Social Security Disability Insurance is a long frustrating process when one has been diagnosed with Huntington’s disease (HD) and can no longer work.  HD is a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Parkinson’s and Alzheimer at the same time.  There is NO CURE.

I was very happy to learn the nonprofit, Huntington’s Disease Society of America (HDSA), hired a specialist to help HD families with the application and procedure to receive disability benefits. http://www.hdsa.org

HDSA offers a Disability Chat program which is designed to provide information, resources and support to both persons affected by HD and their caregivers who are either starting the disability process or have already filed but been denied benefits by the Social Security Administration as well as HDSA social workers who are assisting HD families with their disability applications in their region.

Each month, Disability Chat will feature a topic of interest for either HD families or HD social workers. Each segment will include a 45-minute presentation followed by 15 minutes for discussion with the audience.

Click on link to learn more, next date and how to sign up.  https://hdsa.org/find-help/healthcare-and-future-planning/disability-chat/

https://hdsa.org/find-help/healthcare-and-future-planning/disability-benefits-and-hd/disability-support/

We Can Never Lose HOPE….

Author Therese Crutcher-Marin

I’m a Huntington’s disease advocate having lost my three (3) sisters-in-law to the disease.  We just announced that as of January 1, 2020, we will be a HDSA San Francisco Bay Area Affiliate.  Amy Fedele is the Co-Chair, I’m the Chair.  The Stanford and UCSF Centers of Excellence Teams are involved and it is our hope to increase our presence in the SF Bay Area that has a population of 7.1 million.

My author website is: https://www.theresecrutchermarin.com

You can read about my HD journey and the book I published, Watching Their Dance.  100% of the profits are being donated to the nonprofit, HDSA.  

 

 

 

 

 

October 22, 2019 by
HDSA

HDSA San Francisco Bay Area Affiliate Is Official

Yes, it’s official!  The Huntington’s Disease Society of America (HDSA) Board of Trustees approved our request to become a HDSA Affiliate! http://www.hdsa.org

As of January 1, 2020, the HDSA San Francisco Bay Area Affiliate will begin operating and continue developing a marketing plan for the year.

The Affiliate will strive to support HDSA’s mission: “To improve the lives of people with Huntington’s disease and their families“.

I want to thank the following Huntington’s disease advocates, the team, for their time and dedication to achieve this goal:

Amy Fedele

UCSF HD Team-Dr. Geschwind, Mark Thoma, Julia Glue, Dr. Dietiker https://memory.ucsf.edu/

*Liz Hartland

*Morgan and Chase Parks

*Denny Cone

*Fran and Keith Marin

*Cole Holderman

If you are interested in becoming involved in the fight against Huntington’s disease, contact me at [email protected].

Currently, there are 54 HDSA Chapters & Affiliate across the U.S.  At the first of  the year, there will be 55 Chapters & Affiliate!

 

 

 

 

We Can Never Lose HOPE………

October 8, 2019 by
HDSA

San Francisco Bay Area

Author Therese Crutcher-Marin

After the first of the year, I decided to step down from the Huntington’s Disease Society of America (HDSA) Northern California Chapter Board to collaborate with a group of Huntington’s disease (HD) advocates in the San Francisco Bay Area to develop a HDSA Affiliate.

With a population of approximately seven (7) million, a HDSA Affiliate that could evolve into a Chapter would support Huntington’s disease (HD) families. What is Huntington’s disease?  Click here to learn about HD. http://hdsa.org

So what is an HDSA Affiliate?

An affiliate is a regional representative of HDSA that seeks to promote, assist, enhance and further HDSA’s mission by organizing solely for the purpose of carrying out HDSA’s programs, services and activities through the formation of an officially recognized HDSA Affiliate with a revocable license to use the HDSA name, intellectual property, materials and reputation for that sole purpose for so long as it is a recognized Affiliate. The reality is that an Affiliate is a “Chapter in Training”.

The paperwork has been filed with HDSA and the process could take up to six months to a year.  We are hoping to have a decision from HDSA by the end of 2019.

We Can Never Lose HOPE………

http://omaha.hdsa.org/               http://southernidaho.hdsa.org/      http://texas.hdsa.org/

     

I’m a Huntington’s disease advocate having lost my three sisters-in-law to this horrific disease.  Watching Their Dance, my inaugural nonfiction book, is available on many book websites like Amazon.  100% of the profits are being donated to HDSA.

 

May 14, 2019 by
HDSA

Jenne Colar-Dark

Jenne Colar-Dark has been a member of the Huntington’s Disease Society of America (HDSA) Board of Trustees for over a year.  https://hdsa.org/about-hdsa/board-of-trustees/    

She is the sister of actress, musician, and Huntington’s disease (HD) advocate Kate Miner. Kate is currently on the television show, Shameless. 

Kate Miner Biography

Jenne is gene positive for Huntington’s Disease (HD) and has two children at risk.  She found out HD was in her family in 2014 and has been working to advocate for patients, and raise funds for HDSA ever since.

In 2016, Jenne along with her family hosted the Freeze HD event in Los Angeles.  She continues to participate in the HDSA annual Freeze HD event, along with other HD volunteer engagements with HDdenNoMore, and CHDI.

Jenne graduated from the University of San Francisco with a degree in International Business. She has worked for Experian for the last 13 years in a variety of roles from Professional Services, Account Management, and Program Management.

Kate Miner, her mother & 2 sisters.

After living in the Bay Area for over a decade, Jenne and her family relocated back to Southern California to be closer to her mom and sisters.

Kate wrote a book jacket comment that appears on the front of my nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.  100% of the profits are being donated to HDSA.  To date, John and Therese have donated $14,115.00.  Therese’s author website:  https://www.theresecrutchermarin.com

 

 

 

April 11, 2019 by