Huntington's Disease

Help Pass the Huntington’s Disease Parity Act!

Author Therese Crutcher-Marin

The Huntington’s Disease Society of America (HDSA) has been advocating for several years to get the Huntington’s Disease Parity Act passed.

The Act would waive the Medicare two year waiting period, thereby ensuring individuals receive critical health benefits and care in the early stages of the disease.

To read an in depth description of the Act, visit HDParityActBill.pdf       AND

https://www.congress.gov/bill/116th-congress/house-bill/2770/all-info

Jennifer Simpson, LCSW Senior Manager, Advocacy & Youth Programs, at HDSA, leads the fight.

HDSA makes it easy to help get the bill passed by creating a letter to send to our local politicians to request they pass the bill.  It’s easy!!!    Please visit this website to send a letter to your Congressman(s). write-a-letter to your Congressman

Please take the time to send the letter and let’s get the HD Parity Act passed so no Huntington’s disease family member has to wait two years to have medical coverage.

We Can Never Lose HOPE……………………

 

The Woody Guthrie Family

Happy Birthday Woody Guthrie

Last Sunday, Woody Guthrie would have been 107 years old.  Happy Birthday, Woody! 

Not everyone knows that Woody died from Huntington’s disease and his wife, Marjorie, organized the Committee to Combat Huntington Disease shortly after he died in 1967. After Marjorie’s death in 1983, the organization evolved into the Huntington’s Disease Society of America (HDSA), a nonprofit dedicated to improving the lives of everyone affected by Huntington’s disease and their family.  To learn more about Marjorie, visit: hdsa-pays-tribute-to-founder-marjorie-guthrie

I’m a Huntington’s Disease Advocate and volunteer for HDSA in the San Francisco Bay Area.

To learn about Woody’s achievements and contributions to the world, visit https://woodyguthrie.org/biography/biography1.htm

 

Therese at the 2018 HDSA Annual Convention in LA.

The profits from my nonfiction book are being donated to the HDSA to help in the fight against Huntington’s disease. Since I published in April 2017, I’ve gifted over $14,000.00.  Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s can be found online as an e-book and hard book.

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

We Can Never Lose HOPE………….

HD Advocates

The Woody Guthrie Advocacy Award

This year the Huntington’s Disease Society of America (HDSA) Annual Convention was held in Boston MA.  John and I flew to Boston and on Thursday I attended Leadership Day where leaders of chapters and affiliates meet and learn from the HDSA staff. I was able to attend since Amy Fedele, several other Huntington’s Disease (HD) advocates, and myself are organizing a HDSA San Francisco Bay Area Affiliate.

For the next two days, the attendees choose sessions that are of interest; i.e. Ask the Scientist….Anything, Bringing Kids into Your HD Family, Palliative Care, Catapult Your Volunteer Work in Your Community, Growing Up with HD and many other valuable topics. 

On Saturday evening, a Gala is held to close the Convention and HDSA awards are given out by Louise Vetter, HDSA CEO and President, for many categories; Youth Award, Affiliate of the Year Award, Chapter of the Year Award, Marjorie Guthrie Award, Researcher of the Year Award and several others.

HDSA 2019 Convention

It was at this event, I received the surprise of my life. As I sat next to John and Denny Cone, the HDSA Pacific Region Development Manager, Louise said, “The Woody Guthrie Advocacy Award is being given to a a woman who in 1978 her college sweetheart and his three sisters, discovered their mother had Huntington’s Disease……….   My eyes grew wide and I snapped my head toward Denny.  All I remember after that is pushing my chair back, standing like a robot and walking toward the stage.

I’m honored to receive the award and I will continue to be a Huntington’s Disease Advocate until I have no breath in my body.

  

We Can Never Lose HOPE……………

100% of the proceeds from Watching Their Dance is being donated to HDSA to help in the fight against HD.  Since the book was published in April 2017, I have gifted over $14,000.00 to HDSA.

Thankful

4th of July in Canada

John and I are celebrating the 4th of July this year in Canada.  I was attending the 2019 HDSA Annual Convention in Boston, and from there John and I traveled to Waterloo New York and stayed in Gridley Bed & Breakfast for two days to relax.           

I have always wanted to see Niagara Falls, and decided to stay on the Canadian side because friends suggested it, so we arrived in Canada on July 2nd.  We’re staying at the Villa Alexandrea Bed & Breakfast in Niagara Falls Canada.

From my family to yours, have a wonderful 4th of July.       

 

We Can Never Lose HOPE……………….

HD Advocates

The 2019 Boston HDSA Annual Convention

Every year, the HDSA Annual Convention keeps growing and I’m always surprised at the number of first time attendees. I find this fact wonderful since those first timers find support, information, and more importantly, they find a welcoming community where they never have to feel alone again. https://hdsa.org/about-hdsa/annual-convention/

The 2019 HDSA Convention kicked off with a Team Hope Walk on Thursday evening which always gets folks fired up!

  

I’ve now attended three (3) HDSA Conventions; 2017-Chicago, 2018-Los Angeles and Boston.

In 2017, John and I were on a three-month Midwest book tour in our RV, as I had just published the nonfiction book, Watching Their Dance.  I sold 63 books at the convention.

James and Mel Miller at the 2017 HDSA National Convention in Schaumburg IL.

2018 HDSA Convention

2018 Left to right: Anna Canoni, Nora Guthrie, Louise Vetter & Dr. Nancy Wexler

The next year, 2018, the convention was in Los Angeles, and we drove our RV and parked in Dockweiler State Beach for four nights. The beach was only four miles from the Convention Center but it took me 45 minutes to get there.  Traffic was crazy! I sold 55 books that year.

This past weekend, we flew to Boston and while I was busy all day with sessions, John found a coffee shop, a newspaper, a sports bar for lunch, which made his day enjoyable.

I was honored to receive the HDSA “Woody Guthrie Advocacy Award”, and will continue to advocate and help in the fight against Huntington’s disease.  I’m humbled that HDSA felt I was worthy of this award.

Thank you Huntington’s Disease Society of America (HDSA) for guiding the HDSA volunteers with integrity, grace, patience and information to help Affiliates and Chapters be successful in carrying out the HDSA Mission.

HDSA Mission

To improve the lives of everyone affected by Huntington’s disease and their families.

HDSA Vision

A world free of Huntington’s disease.

We Can Never Lose HOPE……………

 

 

 

 

 

HD Advocates

Disability Attorney Allison Bartlett Hired at HDSA

 

HUNTINGTON’S DISEASE SOCIETY OF AMERICA ADDS ALLISON BARTLETT AS MANAGER OF DISABILITY PROGRAMS

New York, NY (June 11, 2019) – The Huntington’s Disease Society of America (HDSA) is excited to welcome Allison Bartlett, Esq. to the newly created position of Manager of Disability Programs. Ms. Bartlett is a disability attorney who specializes in guiding people with rare, chronic conditions, like Huntington’s disease, through the complex Social Security disability system. She comes to HDSA from the Caring Voice Coalition, where she represented patients with rare diseases, including HD, in their navigation of the legal processes associated with securing disability support.

“We are thrilled to welcome Allison Bartlett to the HDSA team,” said Louise Vetter, HDSA’s President & Chief Executive Officer. “She is a passionate advocate for HD families, and working with HDSA’s Centers of Excellence and social workers, her experience and insight will be a valuable resource in community efforts to remove barriers to accessing Social Security benefits.”

Allison has more than ten years of experience in the non-profit field, working on a variety of issues including human rights, domestic violence, social justice and environmental protections. Allison holds a J.D. from the University of Cincinnati College of Law and a B.A. in International Affairs from James Madison University. She is admitted to the Virginia Bar.

To contact Allison regarding disability inquiries she can be reached at abartlett@hdsa.org and 212-242-1968.

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has NO CURE.

https://www.ssa.gov/disability/

http://www.hdsa.org

We Can Never Lose HOPE……………………..

Author Therese Crutcher-Marin

Fundraising

San Jose Huntington’s Disease 5K Walk & 10K Run Was A Success!

On Saturday, June 22nd, at the Campbell Park in the San Jose area, the 1st Huntington’s Walk/Run was held on the beautiful Los Gatos Creek Trail.  The event raised approximately $13,000.00.

The 10K Runners took off at 9 a.m. and the 5K Walkers at 9:15 a.m.

The results from the 10K Run.                              

                                                                             

This will be an Annual Event every June.  Once we have secured the 2020 date with the City of Campbell we will begin publicizing it!

The San Jose Team Hope committee thanks all the sponsors and all the folks for coming out and helping in the fight against Huntington’s disease (HD).  HD is a rare, fatal, genetic brain disorder that has the symptoms of ALS, Alzheimers, and Parkinson’s at the same time.  And there is NO CURE.http://www.hdsa.org

If you were unable to attend, you can still donate to the event at:  http://www.hdsa.org/thwsanjose

We Can Never Lose HOPE……….

Author Therese Crutcher-Marin

 

 

 

Fundraising

Attention All Runners in the San Francisco Bay Area!

The 1st Team Hope 5K Walk & 10K Timed Run is this Saturday, June 22nd.

           It’s not too late.  You can walk up and register

                                     the morning of the event!

 

Register:  http://www.hdsa.org/thwsanjose

Where:  Campbell Park, E. Campbell Avenue & Gillman Avenue, Campbell CA.

Time:  Check-in: 8 am

Race Time:  Runners-9am & Walkers 9:15 am

Cost:  Runners-$60      Walkers-$25       Children under 12-$10

Why:  You will be helping in the fight against Huntington’s disease that has NO CURE. This is a fundraiser for the nonprofit, Huntington’s Disease Society of America, whose mission is to help everyone affected by Huntington’s disease (HD) and their family. what is HD?

Contact:  Therese Crutcher-Marin 530 906-8415

After Event at Rock Bottom Restaurant and Brewery.  Rock Bottom will donate 10% of all Sales that day to HDSA.  Come and have lunch!!  Tell your server you are there for Huntington’s disease.   https://rockbottom.com/locations/san-jose/

     

We Can Never Lose HOPE……………….

 

HD Clinical Trials, Hope

The Pharmaceutical Company, Genentech

Statement from Genentech.
“There’s an innate brilliance in each of us. It lives in the thousands of thoughts and feelings that move through our bodies each day. It comes to life in our expressions and movements. In how we connect with each other, and in the moments and memories we create together. 

Neurological conditions can dim this brilliance. They can create barriers that impede our ability to
communicate. To move. To remember. Over time, these diseases can rob us of our identities. 

Our hope is that through our work in neuroscience, combining new scientific understanding with clinical advancements, we can help preserve the unique qualities that make people who they are.” stories/preserving-what-makes-us-who-we-are

Author Therese Crutcher-Marin

Last December, Roche/Genentech announced the locations, including 20 sites in the U.S. and 6 in Canada, for their phase 3 study – called GENERATION HD1 – to test efficacy of the huntingtin-lowering therapy RG6042. To read full press release, visit  RG6042-GENERATION-HD1-Study-update-.pdf

We Can Never Lose HOPE……………..

Genentech is a leading biotechnology company that discovers, develops, manufactures and commercializes medicines to treat patients with serious or life-threatening medical conditions.

HDSA Fundraising events

10K Timed Run for Huntington’s Disease-June 22 in Campbell CA

The 1st San Jose Team Hope 5K Walk & 10K Timed Run is fast approaching! 

Mark your calendars and help in the fight against the cruelest disease on the planet; Huntington’s disease (HD).  What is Huntington’s Disease?

To register, go here:  http://www.hdsa.org/thwsanjose

Walkers are: $25, 10K Runners: $60, Children under 12 are: $10.

The San Jose Earthquake Soccer organization, “The Quakes”,  will have games and prizes at the event.  https://www.sjearthquakes.com/        https://twitter.com/SJEarthquakes

The dollars from this fundraiser supports the nonprofit, Huntington’s Disease Society of America (HDSA)’s mission to help everyone affected by Huntington’s disease and their families by providing local services and programs in the San Francisco Bay Area.

     

We Can Never Lose HOPE…………….

Amy Fedele and myself at the HDSA NorCal Chapter Team Hope Walk