Category Archives: Fundraising events

Forget Me Knot Fundraiser

WHAT: Michelle and Dave Mackay’s annual Lake Party fundraiser for FSHD has gone virtual this year. Please watch her video!

WHEN: At your leisure between 1-31st August 2017

WHY: Michelle couldn’t make it to Michigan this year to see you all, but the fight continues.

Please help her achieve her $50,000 goal!  She and Dave will match 100% of all donations! Continue reading

Fourth Annual Songs in the Key of Steven Blier (PHOTOS)

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We had a wonderful Bay Area FSHD Family Day conference with speakers from Stanford, UC Davis, University of Nevada Reno, followed by a lovely gala auction and concert featuring the luminous Amanda Lynn Bottoms and Dimitri Katotakis, singing their hearts out with our beloved Steven Blier. Thank you to all who helped, supported, participated! This is how we build and strengthen our community!

Our San Francisco Concert and Patient Meeting is right around the corner!

Join us for our annual San Francisco Concert and Conference, given in memory of Joyce Hakansson.

Don’t miss our FSHD Family Day Conference and Songs in the Key of Steven Blier benefit concert on Saturday, July 15, at San Francisco’s Jewish Cultural Center. This is the Bay Area’s premier FSHD networking and advocacy event! Our conference provides an exceptional opportunity to hear from pre-eminent FSHD researchers including Peter Jones, PhD, and John Day, MD PhD, about clinical trials and cutting-edge research. There will also be a wealth of “news you can use” about physical therapy, respiratory health, FSHD care standards, orthotics, and navigating the legal and insurance systems.

Following the conference, stay on for our annual benefit concert, a magical evening showcasing the esteemed pianist and song meister Steven Blier, joined by rising stars Amanda Lynn Bottoms and Dimitri Katotakis. You will enjoy a delicious dinner and dazzling silent and live auctions, presided over by our master of ceremonies, Emmy Award winning radio & TV personality Liam Mayclem, best known as the host of EYE ON THE BAY on KPIX 5 and  as “The Foodie Chap.” 

Important deadlines:

Location:
Jewish Community Center of San Francisco

3200 California Street
San Francisco, CA 94118

Disclaimer:This is not a program of the JCCSF. The views expressed are those of the FSH Society and/or its affiliates and guests.

 

Team FSHD Cycling’s RAAM has begun!

DONATE TO HELP TEAM FSHD CYCLING’S CROSS ITS FUNDRAISING FINISH LINE!!

We are more proud than we can say to have Team FSHD Cycling embark today on the 3,000-mile Race Across America to raise awareness and funds for our shared mission to beat FSH muscular dystrophy. Thank you to all who raised funds and sent photos to “put a face” on Team FSHD Cycling’s support vehicles. Over the next 7 days, we challenge you to help us get a donation from all 50 states!! View Team FSHD Cycling’s daily location tracker.

And we're off! Track our progress on the Race Across America website. #fshsociety #raam #cycling #fshdcycling

A post shared by Team FSHD Cycling (@fshdcycling) on

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Team Fundraising for World FSHD Day

FSH Society member Mia Archuleta is asking you to help our community raise awareness and funds by reaching out to your network. Studies show that asking friends and family to donate will multiply your own donations by seven-fold!! Please read on to learn about our team fundraising campaign! NEW: Read this great article about George Pollock – 2017 Race Across America. It is truly inspiring and worth sharing.

Dear Friends,

To mark this year’s World FSHD Day, on June 20th, I am asking you to help raise global visibility and support for the FSH Society.

George Pollock and Team FSHD Cycling are offering an amazing opportunity to raise awareness. As Team FSHD Cycling races 3,000 miles across the continent in the Race Across America this June 17-24th, the live video stream will get millions of hits. We want the world to see the people who they are racing for, the men, women, and children who live with FSHD.

To that end, I am reaching out to you to challenge your family, friends, and associates to help raise much-needed dollars in honor of someone you care about. Your honoree’s photo will be displayed on the side of a Team FSHD Cycling support van as it drives across America, helping to raise awareness in the most personal way about why this cause matters. The more you raise, the larger the photo! This is a once-in-a-lifetime opportunity!

This toolkit includes everything you need to get started and to help you reach your goal. The FSH Society is a 501(c)(3) nonprofit tax-exempt organization. Donations made to the FSH Society are tax-deductible.

DEADLINE TO GET YOUR PHOTO & DONATIONS IN IS JUNE 7!!

Thank you for your kind consideration of this appeal.

Sincerely,
Mia Archuleta
Arlington, Texas

Download the Team Fundraising Toolkit and get going! It includes:

  • Instructions
  • A sample letter to friends and family & FSHD Fact Sheet
  • Sample social media posts & logos to use on social media
  • Sample fundraising tracker

Note: Team FSHD Cycling is holding its 2017 Race Across America Campaign as independent volunteers, not as employees, agents, Board members, advisors, or volunteers of the FSH Society. Likewise, I am making this appeal as an independent volunteer.

Help us promote World FSHD Day with a selfie video!

JUNE 20th is WORLD FSHD DAY!

World FSHD Day


Help us raise public awareness of FSH muscular dystrophy by making a video selfie, urging everyone to take part in this year’s World FSHD Day awareness campaign. Orange Slice SmileRaisingAware

Orange is the international color of World FSHD Day – so we’re using an orange slice to spread the word. All you need to do is make a short video of yourself sharing the message using the script below. Feel free to adapt the script to your own style and voice. Try to get good audio quality, then send your video by DropBox to June.Kinoshita@fshsociety.org. Continue reading

Win a Horizon Off-Road Electric Trike: Bid Now!

The revolutionary Outrider Horizon Trike could be yours!
Bids accepted until 12 noon ET April 11th, 2017

We are auctioning off a Horizon Off-road Electric Trike – model 210A, an adaptive, all-terrain electric trike that can be customized for riders of all abilities. This revolutionary Horizon Trike will be shipped to you right off the production floor, and can be customized to your specifications. Check it out in the video above! Only a limited number are in production so the only way you can get your hands on the extraordinary Horizon is to bid on it by April 11th, 2017!

ElectricBike.com says “This counts as my favorite test ride of any production electric bike ever…Outrider trikes are so much fun to ride, that anyone spending a day on one in the right terrain will probably not forget that day for the rest of their life.”

The Trike was donated by one of the initial backers of the trike’s successful Kickstarter campaign, so 100 percent of this sale will go toward supporting the FSH Society’s mission! Continue reading

2017 RAAM Kickoff Dinner

Race Across America fundraising for FSH muscular dystrophy

June 15, 2017 from 4:00 – 7:00 pm
Urge Gastropub & Whiskey Bank
2002 S Coast Hwy, Oceanside, CA 92054

Please complete the form below to purchase tickets and/or make a donation. Receive a free ticket for collecting $150 or more in donations. Click here to download RAAM Fundraising Toolkit. Once you have collected the donations, please mail to FSH Society at 450 Bedford Street, Lexington, MA 02420 along with donor information.

Learn more about Team FSHD Cycling here!

Volunteers & Committees forming now for:
Raffles, Auction Items, Media contacts, Donations, Sponsors, Graphic Design
Contact: Amy Bekier at amy.bekier@fshsociety.org or (619) 972-0993

PLEASE NOTE: WE ARE CURRENTLY TESTING THE FORM BELOW.

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Auction: Orlando 2-bedroom luxury condo for the holidays!

orangelakevilla

We just received word of this 2BR condo at Orange Lake Resort in Orlando, Florida, available for two prime vacation weeks: Christmas week (Dec. 23-30, 2016) and New Year week (Dec. 31, 2016-January 6, 2017). These one-week timeshares are being auctioned now on eBay. 100% of the sale price is being donated to the FSH Society. Perfect holiday gift for the family! Don’t let this one get away. Spread the word to friends and acquaintances! Check it out and place your bids:

  • December 23 to 30, 2016, bid here.
  • December 31, 2016, to January 6, 2017, bid here.