JUNE 20th is 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. RaisingAware
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
Corporate Matching Gifts: Does Your Company Match Your Donation?
Did you know many companies offer a matching gift program to encourage philanthropy among their employees? And that some companies will even match to spouses, retirees, and board members?
By simply completing the matching gift form from your employer, you may be able to double, or even triple, the impact of your gift!
Click the button below to find out if your company will match your gift:
If you do not find your employer listed, please check with your company’s Human Resources department to see if your company offers a matching gift program. Continue reading
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
As we come up on the last days of 2016, we are taking one final look back on the incredible year it has been, and one last moment to recognize those who have shared their inspirational stories, strength, and commitment to continue to do the things that they love. As we mentioned in Part 1 and Part 2 on our blog, we are sharing stories we received throughout the year from fellow FSH Society members that demonstrate how they won’t let FSHD stand in their way.
Your support is life-changing to those in the Society – and with your continued dedication to finding a treatments and a cure.
Continue reading below to hear the stories of Ryan, Aditya, and Lynne on how they are raising awareness, doing what they love, and how the Society has helped them along the way!
As we continue to look back on the incredible year we have had, we want to recognize others who have shared their inspirational stories, strength and commitment to continue to do the things that they love. As we mentioned in our first post, throughout the remainder of 2016, we will be sharing these stories from fellow FSH Society members that demonstrate how they won’t let FSHD stand in their way.
Your support is life-changing to those in the Society and with your continued dedication to finding a cure, we know that this challenge is possible. Continue reading below to hear more from Kristen, Tom, and Zabrisa on how they are raising awareness, doing what they love and how the Society has helped them along the way!
As we look back on the incredible year we have had, we want to acknowledge those who have shared their inspirational stories, strength and commitment to continue to do the things that they love. Throughout the remainder of 2016, we will be sharing these stories from fellow FSH Society members that demonstrate how they won’t let FSHD stand in their way.
Your support is life-changing to people like Kelly, Amy, Jeremy and Lilia! They’ve shared their victories with us through our #ShareYourVictory campaign. We encourage you to share your own victories by including the hashtag #ShareYourVictory in a tweet or Facebook post.
Join us on Tuesday, November 29, 2016 as we participate in the fifth annual #GivingTuesday!
Entering its fifth year, #GivingTuesday is a global day of giving fueled by social media and collaboration following the widely recognized shopping days of Black Friday and Cyber Monday. Known as the unofficial kickoff to the giving season, every year philanthropies are celebrated and communities around the world join together with the common goal of encouraging giving to a worthy cause.
Two tickets to Super Bowl 51 NRG Stadium, Houston, Texas on Sunday, February 6th, 2017.
This is an extraordinary opportunity to bid on 2 tickets to Super Bowl 51, offered as a LIVE Auction item at our CureFSHD National Gala on November 11th, 2016 Continue reading
At this year’s Inaugural CureFSHD National Gala on November 11, we look to celebrate not just the victories of our tireless researchers and fearless ambassadors, but also the small (yet no less important) accomplishments that individuals with FSHD experience every day.
To celebrate the strength of our Society, please share your own personal victory with us by sending your photos, videos, and stories to Beth.Johnston@FSHSociety.org, or share them on Twitter, Facebook and Instagram by using the hashtag #ShareYourVictory.
We’ll share your victories during the CureFSHD National Gala, and will also be celebrating your triumphs on our website and on social media. We can’t wait for you to #ShareYourVictory with us! Continue reading
For the past 25 years, countless researchers have dedicated their time and energy striving to find a cure for FSHD. Thanks to the work of researchers like Dr. Jeffrey Statland, Dr. Rabi Tawil and Peter Jones, PhD (just to name a few!), we are a strong community filled with some of the brightest minds in science.
At this year’s Patient Connect Conference on November 11, we want to open the floor for you to ask researchers your questions. Do you want to know what they’re working on? What the next big breakthrough may be? Now is your chance. Please send your questions to Beth.Johnston@fshsociety.org, or share them on Twitter, Facebook and Instagram by using the hashtag #AskTheResearcher – – no later than November 8th!
We’ll present your questions to the researchers during the Q&A session at the Patient Connect Conference. We’ll also be sharing the questions and answers on the FSH Society website and our social media channels after the event.