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HDSA Fundraising events

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

 

 

 

 

HDSA Fundraising events

A Big Weekend for Huntington’s disease Fundraisers

I have to shout out about the many Huntington’s Disease Society of America fundraising events this weekend.  All fundraising events, no matter how big or small, are important as they move us closer to a therapy or cure. Other U.S. Huntington’s disease organizations, helping in the fight against HD are:  Help4HD      Huntington’s Disease Foundation          The World in HD      We Have a Face  

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain.

CELEBRATION OF HOPE – A NIGHT IN VENICE 

DATE: 10/13/20177PM
LOCATION: 6111 Landerhaven Drive, Mayfield Heights, OH
LINK: https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1286

                                                                                                                                                         HDSA BOO BASH 

DATE: 10/13/20178AM
LOCATION: American Legion Post Twenty, Keyport, NJ
LINK: https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1180

TEAM HOPE WALK – LIBERTY, MO

DATE: 10/14/20179AM
LOCATION: Liberty Community Center, Liberty, MO
LINK: https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1126

NORTH CAROLINA HUNTINGTON’S DISEASE FAMILY EDUCATION DAY

DATE: 10/14/20179:30AM
LOCATION: Gaston College/Kimbrell Campus, Belmont, NC
LINK: https://hdsa.donordrive.com/index.cfm?fuseaction=ticket.start&eventID=1306

TEAM HOPE WALK – OHIO VALLEY

DATE: 10/14/201710AM
LOCATION: Voice of America Park, WestChester, OH
LINK: https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1200

TEAM HOPE WALK – VIRGINIA BEACH, VA

DATE: 10/14/201710:30AM
LOCATION: Mt. Trashmore Park, Virginia Beach, VA
LINK: https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1237

TEAM HOPE WALK & 5K RUN LANSING, MI

DATE: 10/14/201710:45AM
LOCATION: Granger Meadows Park, Lansing, MI
LINK: https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1223

TEAM HOPE WALK NORTHERN NEW JERSEY

DATE: 10/14/201711AM
LOCATION: Roosevelt Park – Roosevelt Drive, Edison, NJ
LINK: https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1192

TEAM HOPE WALK – BOISE, ID

DATE: 10/14/20172PM
LOCATION: Veterans Memorial Park, Boise, ID
LINK: https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1113

TEAM HOPE WALK & 5K – WASHINGTON, DC

DATE: 10/15/20178AM
LOCATION: Fletcher’s Boathouse, Washington, DC, DC
LINK: https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1256

TEAM HOPE WALK- MAINE

DATE: 10/15/201710AM
LOCATION: Mast Landing School, Freeport, ME
LINK: https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1234

Therese’s first book is a 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

Fundraising Events for Huntington’s Disease

All fundraising events for Huntington’s disease (HD), large, small, in the U.K., Ireland, Scotland, Canada are important as it moves us closer to a cure or therapy.

Huntington’s Disease Society of America (HDSA) Chapters are holding the following fundraisers the first part of October:

October 1st-Las Vegas, NV Team Hope Walk

October 5thBe The Hope Reception, St. Paul MN

October 7th-Delaware Team Hope Walk

October 7th- Greensburg, PA Team Hope Walk

October 8th-Southwest, MI Team Hope Walk

October 8th-Columbia, SC Team Hope Walk

October 13th-Ohio, Celebration of Hope. A Night in Venice

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.  http://www.hdsa.org         https://help4hd.org/    https://www.wehaveaface.org/

We can never lose HOPE………Therese

100% of the proceeds from Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, a memoir/nonfiction book, is being donated to Huntington’s disease organizations around the world.  To purchase the book, go to Therese’s website: http://www.theresecrutchermarin.com and  Amazon    B&N      Kindle    Kobo      Nook 

HDSA Fundraising events

Therese’s Book Tour-Part 2

(continued from Sept. 7 blog)

On June 14th, 2017 John and I arrived at our first stop, Lenexa Kansas to attend our first HDSA Team HOPE Walk on June 17th. I was thrilled to visit Kansas, the state I grew up in and where I still had many relatives living. Aunt Trina and my cousins participated in the walk with us and we had a blast together.

I congratulate Paige Kesler for organizing the walk which raised $11,703.00.  job!  https://hdsa.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=1083 

All dollars from HDSA Chapter fundraisers are sent to HDSA Corporate in NY to fulfill the HDSA Mission:  “Improve the lives of everyone affected by Huntington’s” disease”.

I sold 11 books at this walk, $7.00 per book is donated, which equates to $77.00, so I rounded up and donated $100.00 to the event.

Therese’s memoir/nonfiction book, 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 format.

We can never lose HOPE……………Therese