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.
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.”
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!
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.
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.
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!
A research “pipeline” is the process of creating, testing, and ultimately approving a new drug for use in humans. Huntington’s Disease Society of Americafunds 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.
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.
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 Stanfordand UCSF Medical Center, in San Francisco, HD three (3) local HD support groups, and many online free HDSA services.
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.