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#cure4hdandjhd

HD Clinical Trials

Community Statement From Roche Regarding Clinical Trial on Tominersen Drug

Author Therese Crutcher-Marin

Unfortunately, I have to share sad news on the promising clinical trial on the drug Tominersen.

This statement is from Roche/Genentech on March 22, 2021.  From David West, on behalf of the Roche/Genentech HD team Senior Director, Global Patient Partnership

Dear global HD partners,

As part of our ongoing partnership and following your request to receive important and timely updates about Roche’s HD clinical programme, we wanted to share an important update with you. 

We have tough news to share, and we recognise that it will be even more difficult to receive.

Throughout the Phase III GENERATION HD1 study of tominersen in manifest Huntington’s disease (HD), an independent data monitoring committee (iDMC) has been in place. This committee is separate from Roche and Genentech and regularly reviews incoming clinical study data (that Roche and Genentech do not have access to) to review patient safety and assess the balance of potential risk versus potential benefit for study participants. The committee recently met for a pre-planned review of the latest safety and efficacy data from GENERATION HD1 and made a recommendation about the investigational therapy’s potential benefit/risk profile. Based on the committee’s recommendation, we will permanently stop dosing with tominersen and placebo in the GENERATION HD1 study. It is important to note that the recommendation is not based on any new emergent safety concern, but on a broad assessment of the benefit/risk of the treatment arms compared to the placebo arm over time.

Unfortunately, whilst this will raise questions in the community, we do not yet have access to the data from this study. What we can share with you at this time is provided in this letter and in our press release. Please find our press release here.

To read the full press release, visit:  https://hdsa.org/wp-content/uploads/2021/03/Tominersen-programme-update-Community-letter.pdf

or on https://en.hdbuzz.net/

HDSA had a webinar this morning explaining the “why” of stopping the clinical trial.  The recording will be available in a few days

REMEMBER, We Can Never Lose HOPE……

HD Awareness

Enroll-HD-A Resource for Everyone

Author Therese Crutcher-Marin

My family has been greatly affected by Huntington’s Disease (HD), and after my third sister-in-law, Cindy, died from HD complications, I searched for ways to help in the fight against the cruelest disease on the planet.  What is HD?

One way to contribute is through Enroll-HD.   Enroll-HD is a worldwide observational study of Huntington’s disease (HD), meaning that it doesn’t involve taking a drug but tracks peoples’ health and behavior over time. There are more than 20,000 participants globally, who visit hundreds of sites and all undergo the exact same evaluations yearly. Anyone from an Huntington’s Disease family can participate, regardless of gene status or risk. It is a resource for the entire HD community, including patients, families, patient advocates, clinicians and other healthcare professionals, researchers, and anyone else who has a connection to HD.

The study is enabling scientists to identify new drug targets, helping pharmaceutical companies to recruit participants quickly and efficiently for their trials, and moving the field towards an improved understanding of HD and quality care.

Learn more by visiting www.enroll-hd.org 

HD-Enroll knows that privacy is of the utmost concern to families with HD. Please review HD-Enroll’s privacy policy: https://enroll-hd.org/privacy/

We Can Never Lose HOPE………

Author Therese Crutcher-Marin

I’m a Huntington’s disease advocate and Chair for the Huntington’s Disease Society of America (HDSA) San Francisco Bay Area Affiliate.  Please visit my website at https://theresecrutchermarin.com

 

HD Clinical Trials, HD Research

You’re Invited to the Virtual Education Day Hosted by HDSA UCSF Center of Excellence

Author Therese Crutcher-Marin

The nonprofit, Huntington’s Disease Society of America (HDSA), mission is dedicated to improving the lives of everyone affected by 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.  What is HD?

I’m the Chair for the HDSA San Francisco Bay Area Affiliate and we partner with UCSF Center of Excellence on the upcoming Virtual Huntington’s Disease Education Day.  It’s FREE to attend on March 17th, 2021 from 6 pm to 8:30 pm.

To register, visit:  https://hdsa-org.zoom.us/meeting/register/tJAuduuspjIqE9eZw7hkeztIu-gLZGnwoDh_

We Can Never Lose HOPE…….

 

HDSA Fundraising events, HDSA San Francisco Bay Area AFFILIATE

Stretch It Out For Huntington’s Disease-A Gentle Yoga Class

JOIN US FOR A VIRTUAL YOGA CLASS

AMANDA SHREWSBURY, INSTRUCTOR

OPEN TO ALL LEVELS AND ABILITIES!

Saturday, MARCH 6, 2021 10:00 AM TO 11:00 AM

Register Here:  https://sanfrancisco.hdsa.org/yoga  

(Zoom link will be sent the morning of the event)

Amanda Shrewsbury has been teaching yoga since 2014 and is a 200-Hour Registered Yoga Teacher (RYT) through Yoga Alliance. Over the years she has taught yoga to individuals of all ages, and has experience teaching a variety of yoga styles including power yoga, gentle yoga, and chair yoga. Her primary goal as a yoga instructor is to connect others with the ability to be gentle with their mind and body. She has been involved with the HD community since 2020 as a volunteer, and is a health advocate who has plans to obtain a Master’s degree in Genetic Counseling to continue to give back to others.

We Can Never Lose HOPE……

Author Therese Crutcher-Marin

I’m a Huntington’s disease advocate, the Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author.  My HD Advocate/Author website is https://theresecrutchermarin.com

 

 

 

HDSA San Francisco Bay Area AFFILIATE

Huntington’s Disease Education Day Hosted by UCSF Center of Excellence

The HDSA Center of Excellence 

at University of California, San Francisco Medical Center

is Hosting an FREE EDUCATION DAY ON MARCH 17th – 6:00 pm-8:30 pm

              Register here:  http://sanfrancisco.hdsa.org/edday

Topics Presented:

  • Update on Clinical Trials-Dr. Cameron Dietiker
  • CRISPR- Bruce Conklin, MD
  • Medications for Huntington’s Disease Patients-Dr. Alexandra Nelson
  • Basic Science-Julia Kaye, PhD/Steve Finkbeiner, PhD of the Finkbeiner Lab

UCSF Center of Excellence Team: (not all team members are shown)

Zoom Link will be emailed to the registered participants the day before the event.

         

HDSA Fundraising events, HDSA San Francisco Bay Area AFFILIATE

Stretch It Out For Huntington’s Disease-A Gentle Yoga Class

JOIN US FOR A VIRTUAL YOGA CLASS

AMANDA SHREWSBURY, INSTRUCTOR

OPEN TO ALL LEVELS AND ABILITIES!

Saturday, MARCH 6, 2021 10:00 AM TO 11:00 AM

Register Here:  https://sanfrancisco.hdsa.org/yoga  

(Zoom link will be sent the morning of the event)

Amanda Shrewsbury has been teaching yoga since 2014 and is a 200-Hour Registered Yoga Teacher (RYT) through Yoga Alliance. Over the years she has taught yoga to individuals of all ages, and has experience teaching a variety of yoga styles including power yoga, gentle yoga, and chair yoga. Her primary goal as a yoga instructor is to connect others with the ability to be gentle with their mind and body. She has been involved with the HD community since 2020 as a volunteer, and is a health advocate who has plans to obtain a Master’s degree in Genetic Counseling to continue to give back to others.

We Can Never Lose HOPE……

Author Therese Crutcher-Marin

I’m a Huntington’s disease advocate, the Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author.  My website is https://theresecrutchermarin.com

 

 

 

HDSA San Francisco Bay Area AFFILIATE, Huntington's Disease

SAVE THE DATE-Education Day Hosted by UCSF Huntington’s Disease Center of Excellence

TO THE SF BAY AREA HUNTINGTON’S DISEASE COMMUNITY

The HDSA Center of Excellence 

at University of California, San Francisco Medical Center

is Hosting an FREE EDUCATION DAY ON MARCH 17th – 6:00 pm-8:30 pm

                                            Register here:  http://sanfrancisco.hdsa.org/edday

Topics Presented:

  • Update on Clinical Trials-Dr. Cameron Dietiker
  • CRISPR- Bruce Conklin, MD
  • Medications for Huntington’s Disease Patients-Dr. Alexandra Nelson
  • Basic Science-Julia Kaye, PhD/Steve Finkbeiner, PhD of the Finkbeiner Lab

We Can Never Lose HOPE…

 

HDSA Fundraising events, HDSA San Francisco Bay Area AFFILIATE

Stretch It Out For Huntington’s Disease-A Gentle Yoga Class

JOIN US FOR A VIRTUAL YOGA CLASS

AMANDA SHREWSBURY, INSTRUCTOR

OPEN TO ALL LEVELS AND ABILITIES!

Saturday, MARCH 6, 2021 10:00 AM TO 11:00 AM

Register Here:  https://sanfrancisco.hdsa.org/yoga  

(Zoom link will be sent the morning of the event)

Amanda Shrewsbury has been teaching yoga since 2014 and is a 200-Hour Registered Yoga Teacher (RYT) through Yoga Alliance. Over the years she has taught yoga to individuals of all ages, and has experience teaching a variety of yoga styles including power yoga, gentle yoga, and chair yoga. Her primary goal as a yoga instructor is to connect others with the ability to be gentle with their mind and body. She has been involved with the HD community since 2020 as a volunteer, and is a health advocate who has plans to obtain a Master’s degree in Genetic Counseling to continue to give back to others.

We Can Never Lose HOPE……

Author Therese Crutcher-Marin

I’m a Huntington’s disease advocate, the Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and an author.  My website is https://theresecrutchermarin.com

 

 

 

HD Advocates

Huntington’s Disease and Kate Miner

Kate Miner and her family are very involved in the fight against Huntington’s Disease (HD).  Kate, an actress, musician, singer, Huntington’s Disease (HD) advocate, mother and star of the sitcom, ShamelessMore on Tumblr about Kate and Shameless

Her sister, Jenne Coler-Dark is gene positive for Huntington’s Disease 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 Huntington’s Disease Society of America (HDSA) annual Freeze  HD Event, along with other HD volunteer engagements with HDdenNoMore, and CHDI Foundation  .   Jenne is on the Board of Trustees for the nonprofit, HDSA.

VIRTUAL 6TH ANNUAL FREEZE HD RAISES $200,000 FOR THE HUNTINGTON’S DISEASE SOCIETY OF AMERICA.  Video of Virtual 6th Annual Freeze HD on 9-26-2020youtu.be/RrAXlgDvURo

We Can Never Lose HOPE…………..

I’m a HD advocate, Chair for the HDSA San Francisco Bay Area Affiliate, a blogger and the author of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.  amazonWatching-Their-Dance-Marrying-Huntingtons Watching the Dance Huntingtons Disease

Author Therese Crutcher-Marin

Helping Others, Taking Care of Yourself

During the Pandemic Stretch It Out For Huntington’s Disease

Author Therese Crutcher-Marin

Good Morning Huntington’s Disease Community!         

The Pandemic continues to confine us to our home waiting for our turn to receive the vaccination, so I want to share with you my exercise routine that John and I do about 4-5 times a week.

I hope you will consider incorporating in your day, stretching and getting your heart rate up by marching in place, as an example.  It truly helps you stay positive, feel good about yourself, and uplifts you mentally.

I’m not an exercise expert, I’m giving some suggestions to help you through your day at home.

To watch me huff and puff on the stationary bike, click here:  https://youtu.be/SwHBNkMRB8k

Author Therese Crutcher-Marin

I’m a Huntington’s disease advocate, Chair for the San Francisco Bay Area Affiliate, a blogger and a writer.

 

 

We Can Never Lose HOPE…… 

My Author Website:  https://theresecrutchermarin.com

For more information on Huntington’s disease, please visit:  http://hdsa.org