In 2017, I conducted an interview with Kate Miner. One question I asked:
Tell us about your involvement in Freeze HD and other ways you are trying to educate people about the disease.
Kate: We decided to host a fundraiser as a sort of coming out party to our family and friends many of whom, like us, had no idea what HD was before it affected our family. We rented out a fun music venue in Echo Park called The Bootleg Theater and proceeded to raise over 200k. The event brought out big names like Academy Award winner Annette Bening and an array of television stars. Kate Miner FB page
Do you need some essential oils in your life? Well, this is your chance to win a free aromatherapy rollerball from Love Your Brain Foundation! Sometime during our class on Saturday, we will announce the winner of this raffle. The way it works is easy:
1. Invite friends to this Facebook event or share the link to the HDSA fundraiser page with them directly. https://sanfrancisco.hdsa.org/stretchitout Each friend you reach out to counts as one raffle entry. I know many of you have already invited friends to the page, so we will accept the following as “invites”: 1) new invites (have not seen link or page before), or 2) personal follow ups to people you have already invited, encouraging them to come to the event
2. Message Amanda Shrewsbury on facebook, instagram, or comment on a post with the number of people you have invited or followed up with. You don’t have to do all of your invites/follow ups at once. I will keep a running tally of your number and you can send as many messages/comments as you’d like!
3. Wait for the announcement of the winner at the event and get excited!
The wine tasting event supports the nonprofit, Huntington’s Disease Society of America (HDSA), that is dedicated to improving the lives of everyone affected by Huntington’s disease and their families. http://hdsa.org
May is Huntington’s Disease Awareness Month. #LetsTalkAboutHD
In 2016, I asked Fran, my daughter-in-law, and Vanessa, my daughter, to run in the New York City Marathon on the Huntington’s Disease Society of America (HDSA) TEAM. New York Road Runners offers blocks of guaranteed, non-complimentary entries to qualified and selected nonprofits through the Official Charity Partner Program of the TCS New York City Marathon. https://www.nyrr.org/getinvolved/charity-partners/charity-partners-tcsnycm
Both of these women run marathons, 10K’s and half marathons so they were excited to apply and make money to help in the fight against the cruelest disease on the planet, Huntington’s disease.
The nonprofit, HDSA, participates in the TCS New York City Marathon Charity Partner Program. Fran and Vanessa had to apply to HDSA and commit to raising $3,500.00. Approximately 20 people were admitted to run on the HDSA Team and the team raised over $100,000.00.
Approximately 50,0000 people run the marathon. The event was very organized and the city was packed with bystanders. As they ran through the New York boroughs, people where partying and screaming and clapping for the runners. These two woman cut 10 minutes off their Marathon time because of all the support as they ran.
John, myself, Keith, Scott, Dawn and Jim Garret flew to NY and we all cheered them on. It was a blast and both Fran and Vanessa raised together $8,000.00
Please join the first San Jose VIRTUAL Team Hope 10K Run & 5K Walk on June 20th at 10 a.m. (PST), a fundraiser for the nonprofit, Huntington’s Disease Society of America (HDSA).
The Coronavirus has impacted our daily lives and interfered with many fundraising activities, but the Huntington’s disease community is resilient and we carry on, changing our events so we can continue to provide local resources to help HD families in the San Francisco Bay Area.
The VIRTUAL Run and Walk is FREE to Join. Donations are very appreciated.
On Saturday, May 2nd, 2020, the Marin Family Team raised over $1,000.00 to help in the fight against Huntington’s Disease (HD) by participating in a VIRTUAL Team Hope Walk hosted by the nonprofit, Huntington’s Disease Society of America (HDSA). http://hdsa.org
HDSA is a premier nonprofit dedicated to improving the lives of everyone affected by Huntington’s disease: a rare, fatal, genetic brain disorder that has the symptoms of ALS, Parkinson’s and Alzheimer simultaneously, and there is NO CURE.
Keith & Fran Marin and Jody Sorenson, Fran’s mom
Since the fundraising event was VIRTUAL, my husband, John, myself and my 90-year old dad, Jim, walked in our neighborhood as did folks across the country. Our children and their spouses also walked and even though the HD community couldn’t be together, because of the Coronavirus, I felt a sense of camaraderie and solidarity in my heart.
Why a HDSA Virtual Team Hope Walk? Because Family is Everything. While COVID-19 disrupts everyone’s lives, HD continues to impact the lives of so many families near and dear to us. And even though stay at home orders and social distancing may keep us physically apart, the spirit of the HD Community will not be broken.
The HD community will come together on May 02, 2020 @ 10 a.m. (PST) with photos and videos and stories of the community walking TOGETHER to support HDSA’s mission to improving the lives of everyone affected by Huntington’s disease.
A VIRTUAL walk is a real walk, but on your terms: You get to choose your own course, you can walk in your driveway, neighborhood, in your house and even on treadmill!
Sign up now and participate in the virtual walk by raising money and awareness. Your family, friends,colleagues and health care providers can join your Virtual Team Hope Walk on MAY 2nd, 2020, 10 AM (PST).
*Join the HDSA Familyon May 2nd as we kick offHuntington’s Disease Awareness Month with the LARGEST TEAM HOPEEVENT EVER!
A Heart 4 Huntington’s Beer Event at Lagunitas Brewing Company in Petaluma is the first fundraiser for the NEW HDSA San Francisco Bay Area Affiliate. Purchase Tickets here
Mark your calendars for Monday, February 3rd from 5:30-8:30 p.m. Bring your friends and family for a night to listen to live music and dance, have a beer(s), wind down from your Monday and help in the fight against Huntington’s disease (HD). Food truck on site . What is Huntington’s disease?