Family, Huntington's Disease

More About Social Security and Huntington’s Disease

In a previous blog, I wrote about Social Security Disability Insurance and the difficulty Huntington’s disease (HD) families experience when applying for benefits and how for a HD family, who might have two (2) or more family members struggling with the disease, disability dollars are essential for their financial survival.  https://hdsa.org/find-help/healthcare-and-future-planning/disability-chat/

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

I know a family in town where multiple members are struggling with HD; mom and three (3) adult children who have Juvenile Huntington’s disease.  The father/dad, a physician is still working, and is the caregiver for his loved ones at home.  To have disability benefits for these four loved ones is, no doubt, helpful.

Another family challenged by HD is the O’Donnell Family. A film by Rae Maxwell and produced by HDSA, Her Mother’s Daughter, introduces the world to Kathi O’Donnell and shows the devastating impact that Huntington’s disease (HD) & juvenile Huntington’s disease (JHD) has had on the O’Donnell family. The film is a window into Kathi’s inspiring journey as a caregiver as we see the different stages of HD & Juvenile Huntington’s disease – a rare form of HD that progresses more rapidly than adult onset.

To watch the film, click here. https://youtu.be/zXfDJ2aW4hw

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.  As of January 1, 2020, a HDSA San Francisco Bay Area Affiliate will begin operating.  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.  

 

 

 

Caregiving, Hospice

November Is Hospice Month

Every November for the last ten (10) years of my healthcare career, was focused on promoting Hospice Care in Sutter Auburn Faith Hospice service area.  What is Hospice?

Since I became a volunteer for the nonprofit, Huntington’s Disease Society of America (HDSA), I’m pleased Hospice care is talked about more openly to Huntington’s disease families.  Hospice care supports the patient and the family.

We live in a society that doesn’t like to discuss death, so I like to post information that can help families when confronted with a terminal disease diagnosis.  It’s good to know that Medicare & Medicaid have a hospice benefit.  Most private insurance have one also.  The Outreach Committee that I managed took advantage each November to promote hospice care, educate the community and visit doctors offices.  Patients can be admitted to hospice with a referral from a doctor who believes the patient has six months or less to live. Article:  When-is-it-time-to-contact-hospice

Article:  huntingtons patients would benefit from more hospice involvement researchers argue

To watch a video on Hospice Care, visit: https://youtu.be/sYG5VqRvPiU

Therese at the 2018 HDSA Annual Convention in LA.

I’m a Huntington’s disease advocate and a hospice advocate.  My two (2) sisters-in-law, Marcia and Cindy, who had Huntington’s disease, were on my hospice program and died peacefully with no pain.

You can read about my journey with Huntington’s disease and my hospice work on my author website: https://www.theresecrutchermarin.com

We Can Never Lose HOPE…….

Huntington's Disease

A Risk Worth Taking

Most people do not ponder over the term “at risk” and how these two words can shape your life; either in a good way or a bad way, depending on how you look at it.  “Life is a series of calculated risks – nothing more. Everything that you decide to do has a margin of risk.” 

John and his three (3) sisters discovered, quite suddenly, that their mother had Huntington’s disease, and were “at risk“, each having a 50/50 chance of inheriting the cruelest disease on the planet. Huntington’s disease (HD) is a rare, fatal, brain disorder that has all the symptoms of ALS, Alzheimers and Parkinson’s at the same time.  And, there is NO CURE.  What is HD

At the time, there was no genetic test for the disease, so in my mind, at risk” would be forever. To me, it meant I would live with an unknown factor in my life that could not be controlled.  I’m a planner with no spontaneity in my body. My comfort level is having control of a situation so I’m prepared, and never surprised.

So, with that said, I was unsure about living a life at risk” with the man I loved.  What would you have done if you were in my situation?

Through life experiences, I came to realize that risks are almost always necessary ingredients in the recipe that is happiness.

_________________________________________________________________________

I’m a Huntington’s disease advocate having lost my three (3) sisters-in-law to this horrific disease.  A group of HD advocates and myself have formed a team to become a HDSA San Francisco Bay Area “Affiliate” to serve the HD community where 7.1 million people live. 

My book, Watching Their Dance” is available on many book websites and $7.00 is donated to HDSA every time the book is purchased.  https://www.amazon.com/-/e/B06ZY85776

We Can Never Lose HOPE….

HD Clinical Trials, HD Research

Stanford University Hosts 1st Annual HD Patient Care & Research Symposium

On Saturday, November 2nd, Stanford University will host a Huntington’s Disease Symposium.

This event was created for patients with Huntington’s disease and their families or others who would like to learn more about the disease.  This symposium will highlight current research and experimental therapies, measures that improve health including nutrition, exercise, and physical therapy strategies to improve psychiatric and cognitive challenges in Huntington’s disease and ways to support the patient and families.

The symposium will highlight experts from Stanford Center of Excellence.

To watch a video on HDSA Centers of Excellence, visit:  HDSACentersofExcellence

When:  November 2, 2019  8:30 am–1 pm

Where:  Michael’s at Shoreline, 2940 North Shoreline Blvd.  Mountain View, CA

Register:  https://www.eventbrite.com/e/stanford-huntington-disease-patient-care-symposium-tickets-71682752041?aff=ebdssbdestsearch

To watch a short video on HDSA Centers of Excellence, visit https://youtu.be/A3dGvRsnUS8


The HDSA Centers of Excellence provide an elite team approach to Huntington’s disease care and research. Patients benefit from expert neurologists, psychiatrists, social workers, therapists, counselors and other professionals who have extensive experience working with families affected by HD and who work collaboratively to help families plan the best HD care program throughout the course of the disease. Applications to become an HDSA Center of Excellence are open to all clinics in the United States who share HDSA’s commitment to high-quality, comprehensive care and access to clinical research.https://hdsa.org/find-help/clinical-care-services/hdsa-centers-of-excellence/

Author Therese Crutcher-Marin

We Can Never Lose HOPE………

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

 

Fundraising

Halloween & Hounds 4 Huntington’s Event

                     

                                             It’s Halloween Time!

This Saturday, October 26th, bring the family and your pooch dressed up in Halloween Costumes and participate in the

   Hounds 4 Huntington’s Dog Costume Walk 

Where:  Shollenberger Park in Petaluma. See link for directions cityofpetalumashollenberger

Time:  The Walk starts at 9 a.m. along the beautiful 2-mile loop that walks out by the Petaluma River.  (It is wheelchair accessible)

Why:  To help in the fight against Huntington’s disease; a rare, genetic brain disorder with NO CURE.

Dress your pooch(s) in costume and enter them in contests for best dog costume, biggest dog, smallest dog!

We have great raffle prizes for kids and wine prizes for adults.

Registration:  Walk Up Registration $25 for 1st dog & $10 for each additional dog.

Or register online:  https://app.donorview.com/QV7R

   

 

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.  

 

 

 

 

 

HD Clinical Studies

Oct. 14-Update on the Phase III GENERATION Huntington’s Disease1 Study

Great News for the Huntington’s disease from Roche/Genentech:

Dear global HD patient community,

Today we are pleased to announce that we are increasing the total enrolment in the GENERATION HD1 study (NCT03761849) from 660 to 801 participants worldwide. We believe that increasing enrolment now – before study recruitment closes – keeps the study on track to complete within expected timelines. This study change does not impact participants already enrolled in the study, but it allows for additional patients to enrol in each of the three study groups. The GENERATION HD1 study is evaluating the efficacy and safety of the investigational molecule RG6042 in people with manifest HD. The 25-month study is testing two dosing regimens compared to placebo – RG6042 once every two months (eight weeks) or RG6042 every four months (16 weeks). The open-label extension of the Phase I/IIa study is ongoing and supports the exploration of the two dosing groups in the GENERATION HD1 study.

Why are we making this change?

More data: The additional number of participants will provide more data to equally evaluate both dosing groups, as well as increase the statistical power of the study. This is a technical study design term that refers to the study’s ability to detect a treatment effect. In interactions with the HD community, we have learned the importance of testing both doses – while acknowledging that less-frequent dosing would be less demanding for patients, families and the overall healthcare system in the real-world setting.

More confidence: Prior to GENERATION HD1, a study of this size involving an intrathecally administered investigational medicine has never been conducted in HD. Since the study started recruiting this summer, enrolment has been remarkably rapid worldwide. Based on the interest from the HD community, we are confident that a larger study can fully recruit.

More diversity: Expanding recruitment allows for enrolment of more patients in different parts of the world. US recruitment in particular has exceeded expectations and is now complete. Therefore the additional participants will be enrolled from our network of existing trial sites in nearly 20 countries outside of the US to diversify the study population. Achieving broader global representation in clinical trials is important to our company, as well as health authorities around the world.

We are also pleased to announce that the GENERATION HD1 study is being extended to China. This will be the first time a study testing a Huntingtin-lowering therapy will be brought to the country. Information about Chinese study sites will soon be posted on ClinicalTrials.gov.

The community has been a critical partner throughout the development and progress of the GENERATION HD1 study. The speed of recruitment is thanks to the clinical-trial readiness and commitment of the HD medical and patient community to researching treatment options. We appreciate the partnership with the community and we look forward to providing future study updates.

Sincerely,

Mai-Lise Nguyen, on behalf of the Roche & Genentech HD team Global Patient Partnership, Rare Diseases

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.  To read my HD journey, an inspirational Love story while living in the shadow of HD, see my author website https://www.theresecrutchermarin.com

 

HDSA Fundraising events

Hounds 4 Huntington’s Costume Dog Walk

It’s Halloween time so dress up your dog, your kids and yourself and help in the fight against Huntington’s disease (HD) by participating in the fundraising event, on October 26, 2019 for the nonprofit, Huntington’s Disease Society of America (HDSA), at Shollenberger Park in Petaluma, California. Shollenberger Park

To register your pooch, go to:https://app.donorview.com/QV7R                             

$25 for first dog & $10 for each additional dog.   

Humans are FREE!   

Huntington’s disease (HD) is a rare, fatal, genetic brain disorder that is like having all the symptoms of ALS, Parkinson’s and Alzheimers at the same time.  There is NO CURE.  Learn more about Huntington’s Disease here

There will be contests to enter your dog in; i.e. best costume (dog), biggest dog, smallest dog, shaggiest dog, best behaved dog and a Chinese raffle with lots of wine prizes.

The park trail is a flat 2-mile loop that takes you along the Petaluma River and is wheelchair accessible.

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.  To read my HD journey, an inspirational Love story while living in the shadow of HD, see my author website https://www.theresecrutchermarin.com

 

 

HDSA Fundraising events

The San Francisco Team Hope Walk Results Are In

The San Francisco Team Hope Walk last Saturday, October 5th, was a huge success, raising over $50,000.00 with 300 participants.

Saturday was a beautiful, clear day and the walk on Chrissy Field offered a gorgeous view of the San Francisco Golden Gate Bridge.  It was an awesome sight.

Team Hope Walk’s are HDSA fundraisers but it also serve other purposes.  HD families gather as a community to support one another, to share stories and not feel forlorn and isolated.  They know they are with their people; folks who are living the same life as they are.  What is Huntington’s Disease?

By participating, they don’t feel alone and are happy they can do something to help HDSA move forward in research and providing services to HD patients and their families; i.e. HD support groups, Centers of Excellence to be cared for by doctors/therapists, nurses who are Huntington’s Disease specialist.  If a family is new to HD, they can gather information and resources regarding HD.

This year in the U.S., approximately 99 Team Hope Walks will have been organized, raising money, heightening awareness and supporting the HD community. Huntington’s Disease Society of America Website (HDSA)

   

You can still donate to the event until December 31, 2019.  http://www.hdsa.org/thwsanfrancisco

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.  

 

 

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 theresecrutchermarin@gmail.com.

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………