Browsing Tag

#cure4hdandjhd

Resources

Online Silent Auction Supports Community & Social Support for Huntington’s Disease Families

Author Therese Crutcher-Marin, HD Advocate

The HDSA San Francisco Bay Area Affiliate is hosting an Online Silent Auction to help fund resources available to individuals or a family when they learn that their mother, father, grandmother, etc. has or had Huntington’s disease (HD), like my family did.  It’s life changing. 

The good news is that the nonprofit, Huntington’s Disease Society of America (HDSA) has grown over the years and offers many resources to HD families.  Unfortunately, at this time, there is no cure or therapy for the rare, fatal, genetic brain disorder yet, but the resources available can greatly improve the quality of life to a person struggling with the disease.

To view all HDSA online resources, visit  HDSA Community & Social Support website.

 

We Can Never Lose HOPE…

 

 

 

 

 

 

HD Clinical Trials

Wave Life Sciences Announces Initiation of Dosing in Phase 1b/2a SELECT-HD Clinical Trial of WVE-003 in Huntington’s Disease

Author Therese Crutcher-Marin

WAVE Life Sciences gives the Huntington’s Disease community around the world another reason to  embrace HOPE.  Read the press release from WAVE Life Sciences,“Only clinical-stage candidate for Huntington’s disease designed to selectively lower mutant HTT and spare wild-type HTT

Adaptive trial design to enable faster optimization of dosing and decision-making on next steps for WVE-003; data to be generated through 2022

WVE-003 preclinical data and SELECT-HD trial to be highlighted at EHDN 2021 Remote Meeting September 9-11, 2021″

“Wave Life Sciences Ltd. (Nasdaq: WVE), a clinical-stage genetic medicines company committed to delivering life-changing treatments for people battling devastating diseases, today announced the initiation of dosing in the company’s Phase 1b/2a SELECT-HD clinical trial evaluating investigational WVE-003 as a treatment for Huntington’s disease (HD). WVE-003 is a stereopure antisense oligonucleotide designed to target SNP3, a single nucleotide polymorphism on the mutant huntingtin (mHTT) allele, thereby selectively lowering mHTT protein and sparing healthy, wild-type huntingtin (wtHTT) protein.”

We Can Never Lose HOPE!

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

Please make a donation to the nonprofit, Huntington’s Disease Society of America, to help fight HD.

 

 

HDSA Fundraising events

Online Silent Auction Raises Funds for Huntington’s Disease (1)

The HDSA San Francisco Bay Area Affiliate is hosting an Online SILENT AUCTION from September 18th through October 7th.  There are over 60 items to view. To view items, click here:  https://app.donorview.com/nbX6Z

Funds raised support two HDSA Centers of Excellence at Stanford and UCSF Medical Center, three (3) local Huntington’s Disease (HD) support groups and many free online resources for local HD families.

Items you’ll see online:

Clif Family Vineyard-Napa Gift Certificate for 4 guests for a Seasonal Wine Tasting Experience

Value $150 Starting Bid $90 Minimum Bid $25

             The Table Restaurant in Willow Glen-$100 Gift Certificate Starting Bid $60 Minimum Bid $10

Earrings by Julie Tuton Jewelry-Value $130 Starting Bid $80 Minimum Bid $10

                    Gift Certificate at Quail Lodge & Golf Club for Golf for Four inclusive of Two Golf Carts, Carmel-Value $780 Starting Bid $450 Minimum Bid $50

We Can Never Lose HOPE..

 

 

 

Huntington's Disease

Update on Trey Gray-Huntington’s Disease Advocate

Trey, in the middle, with friends

Here’s what Trey Gray has been up to these days.  Trey is a philanthropist, musician, father, Huntington’s disease advocate and a man living with Huntington’s disease for over 18 years.

Huntington’s disease couldn’t stop Trey, and he found that drumming helped contribute to his longevity. “Any type of oxygen you get into your brain is good, and moving helps,” says Gray. “With drumming I’m doing four limbs sometimes at a time; imagine that in your brain, the neurons that are firing, it’s just fantastic.” Since his diagnosis, Gray has continued playing, in the studio and on tour, with country superstars Faith Hill, Jewel, Brooks & Dunn, and Reba McEntire.

Trey has been the drummer on Brooks & Dunn band for many years and is on the road again performing.
Indianapolis, St. Louis, and Cincinnati! You’re up first! See y’all this weekend to kick off the #RebootTour!
Trey also has a treygrayfoundation
You’ll see this post on his FB page just about everyday.   https://www.facebook.com/trey.gray.564
We Can Never Lose HOPE…….
HD Clinical Trials

Prilenia Gives Huntington’s Disease Community HOPE

Author Therese Crutcher-Marin, HD Advocate

To the Huntington’s Disease community around the world; Do not lose HOPE. 

A couple of weeks ago, I had the pleasure to talk with Henk Schuring Chief Regulatory & Commercialization Officer about Prilenia; a clinical stage biotech company, led by Michael Hayden, MD, PhD., together with a highly experienced team with a track record of success.  Michael is a world-renowned scientist in Huntington Disease research.

Henk found my Huntington’s disease (HD) Advocacy & Author website and emailed me.

It’s a very exciting time since Prilenia is in Phase 3 of a clinical trial on the drug, Pridopidine, an oral drug currently in development for the treatment of Huntington’s disease and ALS. It is administered in a small easy-to-swallow capsule twice a day.

Prilenia participated in 2021 HDSA Convention. They were in the Exhibit Hall last June.

https://hdsa.org/hdsa-virtual-exhibit-hall/prilenia/

 

 

We Can Never Lose HOPE…

Helping Others, Huntington's Disease

What A Dollar Buys

The Huntington’s Disease Society of America (HDSA) San Francisco Bay Area strives to improve the lives of everyone affected by Huntington’s disease (HD) and their families. 

With your donation, HDSA is able to support the following: Donate Here

  1. Research to develop new therapies, provide services and resources to our HD families trying to cope with the effects of the disease.
  2. Grow our advocacy and educational programs to remove barriers to care.
  3. Working together we are making a difference in the lives of people with HD and finding the answers to this devastating disease. All of our work is made possible by public donations.
  4. Below is an example of how powerful your contribution can be.

Author Therese Crutcher-Marin

We Can Never Lose HOPE……. 

HDSA San Francisco Bay Area AFFILIATE

We Need Your Support in the Fight Against Huntington’s Disease

Author Therese Crutcher-Marin

After much discussion and evaluation, the Leadership Team of the HDSA San Francisco Bay Area Affiliate made the decision to move the  San Jose Team Hope 10K Run & 5K Walk to a 100% VIRTUAL event on Sept. 18.                       

Even though we cannot meet in-person, please run/walk in solidarity with with the San Francisco Bay Area Huntington’s Disease community.  A VIRTUAL run/walk is a real run/walk, but on your terms: You get to choose your own course, you can run/walk in your in your house, driveway, neighborhood, local park, hike trail, and even on treadmill! 

You can make a difference in the fight against Huntington’s Disease by signing up for the fundraiser or making a donation to HDSA.  

Signup here: app.donorview.com/Pqe0v

Running team at the 2019 San Jose Team Hope 10K Run & 5K Walk @ Campbell Park.

In the San Francisco Bay Area, we need to raise dollars to support the HDSA Stanford Center of Excellence and UCSF Center of Excellence.  Also, the fundraiser pays the facilitators of HD support groups in Mill Valley, Palo Alto and El Cerrito.   

The event raises funds to further research and support the many HDSA’s online free resources available to HD families across the U.S.                                                           

We Can Never Lose HOPE…

 

HD Research

The Huntington’s Disease Research Pipeline

A research “pipeline” is the process of creating, testing, and ultimately approving a new drug for use in humans. Huntington’s Disease Society of America funds researchers and doctors who are  doing Huntington’s Disease (HD) research at different stages along the pipeline, and collaborates with industry partners to bring information about clinical trials to the public. 

We Can Never Lose HOPE because there are many therapies in the pipeline.  Genentech/Roche and Wave Life Science halted two (2) clinical trials, phase 3, this year that looked promising and that was a disappointing but we shouldn’t lose HOPE.  Click here to see the other therapies being conducted around the world.

                                                      Preclinical research 

Basic research into what goes wrong in the brain in Huntington’s disease continues to provide insights into how the disease might be treated. As targets are identified, existing drugs and supplements known to address that target are reviewed and drug development efforts are instituted. 

To continue reading the article, click here.

Author Therese Crutcher-Marin, HD Advocate

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

Please make a donation to the nonprofit, Huntington’s Disease Society of America, to help fight HD.

 

 

 

Fundraising

The San Jose Huntington’s Disease Team Hope Run/Walk Fundraiser

The 3rd Annual Huntington’s Disease Society of America (HDSA) San Jose Team Hope 10K Timed Run & 5K Walk is Sept. 18, 2021 at Campbell Park in Campbell CA.  Sign up here.

Runners-$60.00 Donate -$30 Walkers and both receive t-shirts.

The participants will run/walk on the Los Gatos Creek Trail; a beautiful trail that is wheelchair friendly.  The runners will be timed by Record Time and the top three (3) runners will receive medals. 

There will lots of raffles and a silent auction and water, Clif bars, bananas, sport drinks will be supplied.

The Mission of HDSA San Francisco Bay Area Affiliate is to improve the lives of everyone affected by Huntington’s disease and their families.  The San Francisco Affiliate drives the mission by making resources available to HD families, so, please support the fundraiser which funds two (2) Centers of Excellence (Huntington’s Disease clinics) at Stanford and UCSF Medical Center, in San Francisco, HD three (3) local HD support groups, and many online free HDSA services.  

We Can Never Lose HOPE…

Author Therese Crutcher-Marin

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

Please make a donation to the nonprofit, Huntington’s Disease Society of America, to help fight HD.

Love

Remembering LoraLee (Marin) Harbin

Today, July 15th, is Loralee (Marin) Harbin’s, my dear sister-in-law, birthday. As a Rememberer, I write this blog to honor her and for the world to know what a loss she was to our family and friends.

Lora was taken from the Marin family at a young age of 41.  Lora had Huntington’s disease as did her mother, Phyllis (Cahoon) Marin.  I am blessed to have had her in my life for 12 years, and unfortunately, my children were too young to have known this wonderful aunt of theirs.

A light radiated from Lora and her smile made them everyone she came in contact with comfortable.  She was the kindest, most giving, loving person I have ever known.

 

  Happy Birthday, Lora……………John, Keith, Vanessa and I miss you and you will live forever in our hearts.

                                           We Can Never Lose HOPE………

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

Please make a donation to the nonprofit, Huntington’s Disease Society of America, to help fight HD.