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HDSA Fundraising events

HDSA Fundraising events

Inaugural San Jose Team Hope 5K Walk & 10K Timed Run

Huntington’s Disease Society of America (HDSA) Chapters/Affiliates have hosted Team Hope Walks across the United States for years.  What is Huntington’s disease?  

Since their inception in 2007, Team Hope Walks have occurred in over 100 different cities and have raised more $18 million for the cause. What is Team Hope Walk? 

A group of Huntington’s disease (HD) advocates, in the San Francisco Bay Area, and myself are hosting a Team Hope Walk and adding a 10K Timed Run.  The event is the San Jose Team Hope 5K Walk and 10K Timed Run

We added the Timed Run to bring in folks from outside the HD community to heighten HD awareness and also raise more money to help in the fight against this horrific disease.

The EVENT is being held on the Los Gatos Creek Trail, it’s beautiful, located in the Campbell Park in Campbell.

DATE:   June 22, Saturday.

RUNNERS can pick up their bibs at Sports Basement in Campbell on Friday, June 21, from 5-9 pm. Or the next morning.

TIME:  Check-in starts at 8 am.  10K Runners start at 9 am and Walkers at 9:15 am.

REGISTER: http://www.hdsa.org/thwsanjose

Cost: Runners: $60   Walkers: $25  Children under 12: $10

We Can Never Lose HOPE………..

I’m a Huntington’s disease advocate having lost my three sisters-in-law, Lora, Marcia and Cindy to this horrific disease.  Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is a nonfiction book that I published and 100% of the proceeds are being donated to the nonprofit, HDSA.  You can find it on many book websites like Amazon. https://www.amazon.com/Watching-Their-Dance

 

HDSA Fundraising events

The Hobb’s Family

At this year’s Chico California Team Hope Walk, Debra Hobbs will volunteer at the walk for the first time with HDSA’s Pacific Region. Since 2007, Team Hope Walk have occurred in over 100 cities and is a fundraising campaign designed to provide hope and support for those affected by Huntington’s disease (HD).

This is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure.

“This is my first time ever doing something like this, and I will do my best,” said Debra. “I have only been to one other walk and I really enjoyed it. To me it brought everyone together and it educated the ones who didn’t know about HD.”

Her story began in 2009 when her husband was diagnosed with HD. She has been with him for over 36 years and has stayed by his side through thick and thin. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.

“He went into a deep depression and then he lost his job,” Debra explains. “We lost our home a few years later, because of bad judgment on his part due to HD.”

They would pull through the hard times and settled into their new lives. As the disease progressed, she would eventually become his caretaker.

Debra and her husband lived their entire life in Chico, which includes starting a business there. She wanted to give back to the community as she considered them family.

“I feel that people need to know about HD, and what it does to our loved ones,” said Debra. “My family is being torn apart because of this disease. HD has taken the love of my life away from me. So we need to bring awareness and raise money to find a cure.”

HDSA’s Pacific Region will be hosting the Chico California Team Hope Walk on May 11th from 9:00 AM – 12:00 PM at Cedar Grove Park. For more information, go to http://www.hdsa.org/thwchico.

Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes Huntington’s disease. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of Huntington’s disease are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously.

The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today and hope for tomorrow for people with HD and their families.

​To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit http://www.HDSA.org or call 1(800) 345-HDSA.

Author Therese Crutcher-Marin will be working at the event and selling her nonfiction book, WatchingTheir Dance.  100% of the proceeds from the book is being donated to HDSA to help in the fight against Huntington’s disease.  Author Website:  http://www.theresecrutchermarin.com

HDSA Fundraising events

A Chico Fundraiser to Fight Huntington’s Disease

If you haven’t been to Chico California, make a day of it starting with the HDSA Chico Team Hope Walk.  Then after the fundraiser, check out Sierra Nevada Brewing Company in Chico, take a tour and also have lunch or dinner at their restaurant.  https://sierranevada.com/beer/

The Chico Team Hope Walk begins 9 a.m. and the cost is $25.00 and if you registered by 4-1-19, you will receive a T-shirt.

To register:  http://www.hdsa.org/thwchico

The Team Hope Walk program is Huntington’s Disease Society of America’s (HDSA) signature grassroots fundraising campaign designed to provide hope and support for those touched by this devastating disease, Huntington’s disease (HD). HDSA is a premier nonprofit improving the lives of everyone affected by Huntington’s disease.

All proceeds support HDSA’s mission to improve the lives of people affected by HD and their families. http://www.hdsa.org

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. #HDSA

John and I will be helping with the event and I’ll also be selling my nonfiction book, Watching Their Dance, at the event. 100% of the profit is being donated to HDSA. So far, I’ve gifted $14,100.00 to HDSA.

Author website: http://www.theresecrutchermarin.com

 

HDSA Fundraising events

HDSA 2018 NYC Marathon Team

The results are in for one of the biggest fundraiser for Huntington’s Disease Society of America (HDSA) held on November 4, 2018.

The 26 runners on the 2018 HDSA NYC Marathon Team, raised      $114,560.00!

                 Thank you so much

          

To read about the 26 HDSA Team runners, go to: https://www.crowdrise.com/o/en/campaign/huntingtons-disease-society-of-america-nyc-2018

Our daughter, Vanessa, and daughter-in-law, Fran, were on the HDSA 2016 NYC Marathon Team and raised $110,000.00.                    

Our son Keith, son-in-law, Scott, Scott’s parents, John and I traveled to New York and cheered them on.  We had so much fun while the runners raised money to help in the fight against Huntington’s disease.What-is-HD

To apply to be on the 2019 HDSA NYC Marathon Team, go to this page in March to sign up: https://hdsa.org/how-to-help/nyc-marathon-team/

We Can Never Lose Hope…………..

HDSA Fundraising events

TV Interview with Huntington’s Disease Advocates Therese Crutcher-Marin & Amy Fedele

Amy Fedele and myself were lucky to be on KXIP CBS Channel 5 San Francisco to promote the 2018 HDSA San Francisco Team Hope Walk (October 13, 2018). Thank you CBS, and Pat Rose, San Francisco publicist who donated her time to get us on TV!

Click here to watch the interview:  https://cbsloc.al/2CPiH5v

A picture of my nonfiction book, Watching Their Dance, was shown on the screen during our interview. 100% of the proceeds from the book is being donated to the nonprofit, HDSA.  My Author Website

To purchase book:   https://www.amazon.com/-/e/B06ZY85776

Huntington’s disease is a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Parkinson’s and Alzheimers disease at the same time.  There is NO CURE!  Only approximately 30,000 American’s have the disease and 10% of those cases are children with Juvenile Huntington’s disease.   What is Huntington’s disease 

We Can Never Lose Hope……….

HDSA Fundraising events

San Francisco Team Hope Walk October 13

Amy Fedele is the Coordinator for the SF Team Hope Walk. (with husband, Matt)

The Team Hope Walk program is Huntington’s Disease Society of America’s (HDSA) signature grassroots fundraising campaign designed to provide hope and support for those touched by this devastating disease. All proceeds support HDSA’s mission to improve the lives of people affected by HD and their families.  In 2018, 94 Team Hope Walks will be held across the U.S.

Huntington’s disease (HD) is a rare, fatal, genetic brain disorder that is like having ALS, Parkinson’s and Alzheimer’s at the same time.  There is NO CURE.  It slowly deteriorates a person’s physical and mental abilities and usually strikes during prime working years. Every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. http://www.hdsa.org

Please help in the fight against HD and Juvenile HD by supporting the Walk or becoming a Sponsor.  To register, http://www.hdsa.org/thwsanfrancisco or to be a Sponsor, please email Amy Fedele, Walk Coordinator at: hdsabayarea@gmail.com  Read Amy’s story:  Amy Fedele’s Story

 

We Can Never Lose HOPE………..

HDSA Fundraising events

A Rare Disease That Needs a Cure

 

Phyllis Marin

Lora, Cindy, Marcia Marin

Huntington’s disease (HD) is considered a rare disease because it affects 1 in 10,000 people in the U.S.

Definition:  Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. HD is known as the quintessential family disease because every child of a parent with HD has a 50/50 chance of carrying the faulty gene. Today, there are approximately 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease.

The gal in the top left hand corner is John’s mother and the three lovely ladies in the other picture are my sisters-in-law.  They all died of complications from Huntington’s disease at young ages.

The disease affects children and adults and there is NO CURE.  Juvenile Huntington’s disease, JHD, is approximately 10% of all cases.

Information on HD from Stanford University 

HDSA Northern California Chapter is hosting the 10th Annual SACRAMENTO TEAM HOPE WALK on September 8th.  http://northernca.hdsa.org/ 

Northern California Chapter FB page:  https://www.facebook.com/hdsanocal/

Please support this 5K Walk along the Sacramento at the River Walk Park in West Sacramento; 651 2nd Street.

Adults-$25.00 Children-$10.00.  When registering prior to the Walk, you will receive a HOPE Walk T-shirt and a free breakfast.

To register, click here:   http://www.hdsa.org/thwsacramento 

 

We Can Never Lose HOPE……

HDSA Fundraising events, The Marin Siblings

John & Therese Marin Team Hope Walk

John and I are participating in the HDSA Sacramento Team Hope Walk on Sept. 8th, 2018 to help in the fight against Huntington’s disease that killed my 3 sisters-in-law, Lora, Marcia and Cindy. Click here to register or to make a

Lora, Cindy and Marcia Marin

donation:  https://hdsa.donordrive.com 

We are so grateful John tested negative for the mutated Huntingtin gene in 2016.  I’m on the Huntington’s Disease Society of America (HDSA) Northern California Chapter Board of Directors organizing fundraisers and heightening awareness. http://www.hdsa.org

LUNCH IS PROVIDED WHEN YOU REGISTER 

 

We Can Never Lose HOPE……

 

HDSA Fundraising events

HDSA NYC Marathon Team Raises $165,000.00

Yesterday, Sunday November 5th, 24 HDSA NYC Marathon Team Members ran the historic event.
The athletes raised approximately $164,496.00 for Huntington’s Disease Association of America (HDSA).
Congratulations to all the runners and thank you! Together we can win the fight against Huntington’s disease.
Russ Christian                 Suffolk, VA                            
Gail Schurlow                 Lakeview, MI                                             
Lindsay Morrison            Lebanon, OH                     

Therese’s memoir/nonfiction, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on her author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks file.

We can never lose HOPE…….Therese  

100% of the profits from Therese’s book is being donated to HDSA.

 

HDSA Fundraising events

Jan Nolta Honored at SF Team HOPE Walk

Jan Nolta, Ph.D., director of the university’s stem cell program and the UC Davis Institute for Regenerative Cures Director of the Stem Cell Program at UC Davis School of Medicine, will be honored at the 11th Annual SF HDSA Team Hope Walk on October 21st.  To sign up for the Walk, please go to SF HOPE WALK 

Just a few weeks ago,The California Institute for Regenerative Medicine was awarded a nearly $8 million grant to University of California, Davis, stem cell researchers to launch a special clinical trials program in Sacramento to accelerate the therapeutic development and delivery of stem cell therapies in human patients.

Therese will be at the event promoting her memoir/nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. The book is available on her author website:   http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo,Nook, iBooks format.

100% of the proceeds from the book is being donated to Huntington’s Disease Society of America (HDSA).

 We can never lose HOPE………………Therese