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………

About Author

The Summer of 1968

Grandmother, Chris Crutcher

As the summer heat and long days fade into the colors of Fall, which is my favorite time of year, I find myself reminiscing of summers gone by; particularly the summer of 1968.  

This was my last summer in Shawnee Mission Kansas, where I grew up with grandparents, aunts, uncles, cousins close by, and it was as the beginning of a change I never imagined.  When the summer of 1968 ended, I was coming of age and it was the last time I thought and acted like a kid.  What-does-coming-of-age-mean

Crutcher Family 1966

In May 1969, my family moved to Riverside California and a new social culture was cast upon us. Gone were the carefree days of walking to the swimming pool with my sisters and neighborhood kids, catching fireflies at dusk, making up games, playing outside until my father stood on the back porch and whistled for us to return home and itching the chigger bites until they turned red.  

This is not an unusual story, we all become teenagers, priorities change and drama enters lives.  At age 13, in sunny California, I still went to the swimming pool with my girlfriends, but it was to get a tan, not get my hair wet and gossip.

I’m a Huntington’s disease advocate having lost my three (3) sisters-in-law to this horrific disease.  A group of HD advocates have formed a team to become a HDSA San Francisco Bay Area “Affiliate” to serve the HD community of 7.1 million.  The San Francisco Bay Area deserves to have a HDSA Chapter which we will hopefully become over the next couple of years.  What is Huntington’s disease

The nonfiction 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…….

 

HDSA Fundraising events

KPIX5 Bay Area Focus, Dr. Geschwind on Huntington’s Disease & Upcoming SF Hope Walk

On September 26th, 2019 Dr. Geschwind, from UCSF Center of Excellence, and myself were interviewed by Michelle Griego from KPIX5 Bay Area Focus. The segment aired last Sunday.  WhatIsHD?

A huge thank you to Michelle and KPIX5 staff for giving us the opportunity to promote the HDSA San Francisco Team Hope Walk this Saturday, October 5th.

To register, visit http://www.hdsa.org/thwsanfrancisco

Dr. Michael D. Geschwind is a neurologist at the UCSF Memory and Aging Center who specializes in assessing and treating rapidly progressive dementias, including prion diseases such as Creutzfeldt-Jakob disease. He helped establish a hospital program for the assessment of rapidly progressive dementias at UCSF Medical Center, the first of its kind in the country.

In his research, Geschwind studies cognitive dysfunction in movement disorders, such as Huntington’s disease, corticobasal degeneration, progressive supranuclear palsy and other parkinsonian dementias. https://www.ucsfhealth.org/michael.geschwind

To watch the video, click here:  https://www.youtube.com/watch?v=S0ENBjOlAe4

We Can Never Lose HOPE…….

Huntington's Disease

A World Free of Huntington’s Disease

Huntington’s Disease Society of America’s Vision (HDSA) Statement is “A World Free of Huntington’s Disease (HD)”.

Wouldn’t that be wonderful?  No more suffering, no more uncertainty, no more contemplation of whether to have a child or not; too many issues to list that affect HD families that most of the world doesn’t have a clue about.

The picture shows logo’s of companies that support the Huntington’s community in their own unique way.  Wouldn’t it bee nice if we didn’t need these companies who supply durable medical equipment, medications, etc. to support a loved one with Huntington’s disease.

Hopefully, in the not too distant future, these companies can concentrate on curing other devastating neurodegenerative diseases like ALS, Alzheimers and Parkinson’s to name a few.

We Can Never Lose HOPE……

Therese selling books at the Woody Guthrie Folk Festival in Okemah OK in July 2017

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.  The San Francisco Bay Area deserves to have a HDSA Chapter which we will hopefully become over the next couple of years.

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