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HDSA Fundraising events

San Jose Team HOPE Timed 10K Run & 5K Walk Will Be IN-PERSON

The 3rd Annual HDSA San Jose Team Hope 10K Timed Run & 5K Walk was approved by the City of Campbell to hold an IN-PERSON event on June 19th, 2021 at Campbell Park.
10K Runners can pick up their bibs at Campbell Sports Basement on Friday, June 18 from 5-7 pm. 1875 S Bascom Ave Suite 240, Campbell, CA
Get your running and walking shoes on and sign up for the fundraiser to help in the fight against Huntington’s Disease. SIGN UP HERE: hdsa.org/thwsanjose

Runners will be timed courtesy of Record Timing, owner Shawn Laughlin. https://live.recordtiming.com/

Author Therese Crutcher-Marin

I’m the Coordinator for the Run/Walk and we’re so happy that we’ll be seeing and hugging our Huntington’s Disease families and friends in-person.

Please make a donation to the upcoming fundraiser HERE.
We Can Never Lose HOPE…

HD Research

HDSA Brings Young Scientists Into the Field of Huntington’s Disease Research

The Huntington’s Disease Society of America (HDSA) is pleased to announce the recipients of the 2021 Donald A. King Summer Research Fellowships, a vital program to train the next-generation of scientists with research expertise in Huntington’s disease. Huntington’s disease (HD) is a rare, hereditary neurodegenerative disorder currently affecting approximately 41,000 Americans. More About HD   

The purpose of this fellowship program is two-fold.  First, to attract the brightest young scientists into the field of Huntington’s disease research; and second, to facilitate meaningful HD research to clarify the biological mechanisms underlying HD pathology.

After review by HDSA’s Scientific Advisory Board, two young scientists were awarded 2021 Donald A. King Summer Research Fellowships.

  • Ratnesh Kesineni (University of Central Florida) will be mentored by former HDSA Human Biology Fellow Dr. Amber Southwell and will explore a potential link between biological age and aggregation of misfolded mutant huntingtin (mHTT) for potential therapeutic targeting.
  • Russell Wells (Whitworth University) will work with Michael Sardinia, PhD, DVM, to study the effects of dihexa, a small molecule that has previously shown positive effects in Alzheimer’s and Parkinson’s disease models, for the treatment of Huntington’s disease phenotypes in mice models.

    Author Therese Crutcher-Marin

    We Can Never Lose HOPE….

  • Click here to make a donation to the nonprofit, HDSA, and help us in the fight against Huntington’s disease……..the cruelest disease on the planet.
Huntington's Disease

Prevalance of Huntington’s Disease

There are approximately 7,000 rare diseases in the world and Huntington’s disease (HD) is one of them. National Organization for Rare Disorders

Author Therese Crutcher-Marin

To truly understand the rarity of HD, you just have to look at the numbers.  It’s staggering how rare HD is around the world.  Information on Huntington’s disease

The prevalence of Huntington’s Disease (HD) has been reported to vary with ethnicity and geographical location, confirming that demographic differences influence the number and composition of individuals with HD.  Since HD is believed to have major origins in Northern Europe, it is not surprising that populations of Northern European descent are recorded as having the highest prevalence of HD in the world.

In the United Kingdom (UK) there are 12.4 per 100,000 persons or 1 out of every 8,065 individuals may be affected with HD.  Huntington Study Group

Other countries where Huntington’s is particularly prevalent include Ireland (10.6 per 100,000); Norway (6.7); Italy (6.35); Australia (6.3); Denmark (5.8); Great Britain (5.4); Slovenia (5.2); and Sweden (4.7).  Huntingtons Disease News

N.neurology.org  estimated the true HD prevalence in the US to be 41,467, while the number of persons currently diagnosed is at least 21,331.

The percentage of Americans living with HD is .014 of the U.S. population.  We are a very small population and that’s why HD is considered a RARE DISEASE. (A disease is considered rare, when it affects less than 200,000 people)

Author Therese Crutcher-Marin Book Signing in Auburn CA

I’m a Huntington’s Disease Advocate, Chair for HDSA San Francisco Bay Area Affiliate, a blogger and author or Watching Their Dance. Watching the Dance Huntingtons Disease

To purchase the book, go to amazon.com/Watching-Their-Dance-Marrying-Huntingtons

100% of proceeds from book sales is donated to the nonprofit, HDSA.  http://hdsa.org

HDSA San Francisco Bay Area Affiliate Facebook page

HD Clinical Trials

Good News From uniQure For Huntington’s Disease Families

Two recent press releases from uniQure provide welcome good news: the first ever Huntington’s Disease (HD) gene therapy, known as AMT-130, has been administered via brain surgery to a small set of participants in an early safety trial. At the same time, uniQure has published findings in HD animal models that increase confidence in the drug’s ability to lower huntingtin, especially in parts of the brain most affected by HD.         

The first gene therapy for HD

Gene therapy is a technique to introduce, replace, or remove genetic material from a person’s cells to treat a disease. In the case of Huntington’s disease, current gene therapies seek to inactivate the faulty message (RNA) produced by the HD gene, ultimately lowering the amount of huntingtin protein in the brain or body. There are dozens of research laboratories and companies working on different approaches to this, but uniQure’s HD gene therapy, AMT-130, is the first to be tested in humans.

To read the full article on HDBUZZ, Click here: https://en.hdbuzz.net/302 

We Can Never Lose HOPE….

Author Therese Crutcher-Marin

I’m a HD advocate, Chair for HDSA San Francisco Bay Area Affiliate, an author and a blogger.

Visit my website at:  https://theresecrutchermarin.com

 

HD Awareness, HDSA Fundraising events

KSRO Talks with Therese Crutcher-Marin About Huntington’s Disease

Listen to the in-depth talk I had with Michelle Marques, host of Sonoma County Focus on radio station KSRO in San Francisco North Bay. 

Click here to listen to the interview:  https://www.ksro.com/episode/sonoma-county-focus-fundraiser-for-huntingtons-disease-society-of-america/

Heightening awareness of Huntington’s Disease is important so I was grateful to have twenty minutes to talk about the disease.  I also shared information regarding the HDSA San Francisco Bay Area Affiliate upcoming Virtual Trivia Night with Sonoma County Beer fundraiser on April 25, 2021.

Enjoy a night of Trivia while sipping on HenHouse, Bear Republic & Lagunitas beer!

Sunday, April 25, 2021 5:00 pm – 8:00 pm

Open to San Francisco North Bay residents/or anyone who can pick up their beer in Petaluma.

Must be 21 or older to participate.

$40 donation per person; each person will receive a total of 4 beers, a combination of HenHouse, Bear Republic & Lagunitas.  (while supplies last)

Form a trivia team (any number of people can be a team), enjoy local brews, and compete for a case of beer (24 – 16 oz cans) from one of the 3 beers.

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

 

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 

 

HDSA Fundraising events

Thank you to Lagunitas, HenHouse and Bear Republic Breweries

Author Therese Crutcher-Marin, HD Advocate

I want to thank HenHouse, Lagunitas and Bear Republic Breweries in Sonoma County CA for donating 10 cases each to  the nonprofit, Huntington’s Disease Society of America (HDSA) for our upcoming Virtual Trivia Night with Local Beer.

 

 

Huntington’s Disease Society of America‘s (HDSA) mission is to improve the lives of everyone affected by Huntington’s disease and their families.  Since there is NO CURE, HDSA strives to have local resources available to Huntington’s disease families; i.e., two (2) HD clinics, one at Stanford and one at UCSF Medical Center; three (3) monthly HD support groups in Palo Alto, Mill Valley and El Cerrito, two (2) Education Days and many online resources.  HDSA also offers Fellowships to young scientists.

Fundraising

Virtual Trivia Night with Local Beer from Sonoma County

The HDSA San FranciscoBay Area Affiliate  is hosting a local fundraiser in Sonoma County with local beer companies from Petaluma, HenHouse, Lagunitas, and Bear Republic.

It’s a unique event because participants will pick up their beer in Petaluma, form teams and play a virtual game of trivia at their home.  Here’s the details:

Enjoy a night of Trivia while sipping on Local Brewing Company beer!

Sunday, April 25, 2021 5:00 pm – 8:00 pm

Open to San Francisco North Bay residents (Sonoma County).

Must be 21 or older to participate.

$40 per person, each person will receive 4 beers compliments of HenHouse, Lagunitas and Bear Republic.  (while supplies last)

Form a trivia team (any number of people can be a team), enjoy local brews, and compete for a case of beer (24 – 16 oz cans) from HenHouse, Lagunitas or Bear Republic Brewing Companies in Petaluma and Rohnert Park  

Please pick up your beer at 15 Cleveland Lane, Petaluma on Saturday April 24 from 10:00 am to 6:00 pm, and Sunday April 25 from 10:00 am to 3:00 pm.

Call Vanessa Garrett at 530 906-3950 to arrange pick up.

Call Therese Crutcher-Marin at 530 906-8415 to arrange delivery. Delivery only by prearranged circumstances.

To signup, visit:  https://sanfrancisco.hdsa.org/trivianight

Author Therese Crutcher-Marin

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

We Can Never Lose Hope…

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…….