The FSH Society is excited to celebrate the Second Annual World FSHD Day and join the global effort to raise awareness to FSHD this June 20th. To build upon last year’s success, we’re calling upon you—our biggest supporters—to spread the word!
We ask that you join us along with members of FSHD Champions in participating in our Orange Slice Selfies campaign. With orange as the official color of World FSHD Day, we’re asking that supporters post a photo of themselves to social media using an orange slice in place of their smile with the official hashtag #WorldFSHDDay.
Download World FSHD Day Toolkit here.
Additionally, we encourage supporters throughout the country to reach out to their local Department of Public Works in an effort to light up notable landmarks (bridges, buildings) orange in honor of patients and families. With Boston’s famed Zakim Bridge set to be lit orange on June 20, we would be thrilled to have the country from coast to coast lit orange!
Within this year’s 2017 World FSHD Day Toolkit, you will find example social posts to share your selfies, an email template to share Orange Slice Selfie photos with reporters at your local newspaper, and materials to assist in contacting your local Department of Public Works to light up your local landmark orange.
Please find an editable Word document of the toolkit below, and don’t forget to share your photos with us using #WorldFSHDDay on June 20! Please feel free to contact us at firstname.lastname@example.org with any questions.
Download World FSHD Day Toolkit here.
Board member George Pollock, who is racing across America this June to raise awareness and funds for FSHD, was featured in his high school’s magazine. In the article, George discusses what gave him the idea to participate in the race, what keeps him up at night worrying, and what he hopes to come out of the race. Read it here.
Source: Perspectives Spring 2017.
World FSHD Day is right around the corner and we know you want to be ready to raise awareness. The Society’s World FSHD Day t-shirts are here in the official color: orange. Get into the spirit of World FSHD Day however you can! Get creative! Paint your nails orange, put up orange lights near your house, participate in our orange slice selfie campaign, use orange chalk to draw the World FSHD Day logo on your driveway! Dress up your friends in the official t-shirt and do a flash mob at the mall! The possibilities are endless. Share whatever you do to mark the day with us on our Facebook page, Twitter, and Instagram, using #WorldFSHDday. Unite with FSH Society members all over the world as we raise awareness about Facioscapulohumeral Muscular Dystrophy. Buy your t-shirt here!
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
by June Kinoshita
During the month of June of this year, the FSHD community will enjoy the thrill of having one of its own lead an eight-person team in the Race Across America (RAAM), a bicycle race from Oceanside, California, to Annapolis, Maryland. The team, recruited by George Pollock, plans to compete in the Open Relay Division. The team expects to complete the race in under seven days and cover more than 450 miles a day. You can make a donation in honor of Team FSHD Cycling here!
The team has a personal connection to the disease. Pollock has FSHD. He started to have muscle weakness in his lower right leg while in his late twenties. Ten years later, when he experienced muscle weakness in his left leg, he was finally diagnosed with FSHD. Fortunately for him, the disease is progressing slowly. He was recently elected to the Board of Directors of the FSH Society and has made a commitment to promote awareness to improve diagnosis, support patients, and raise money to fund the Society’s mission. Continue reading
Team FSHD Cycling, formed by George Pollock Jr., will participate in the Open Division as an 8 person team in this year’s Race Across America, one of the most respected and longest running ultra-endurance events in the world. Racers must cycle 3,000 miles across 12 states and climb over 170,000 vertical feet. The 2017 RAAM begins in Oceanside, California, on June 13, and ends approximately 10 days later in Annapolis, Maryland. Team FSHD Cycling is racing to raise awareness of FSH Muscular Dystrophy and has a goal to raise $101,000 for the FSH Society. Visit the Team FSHD Cycling web page for details about the route and team. Be inspired by this great article about George Pollock and 2017 Race Across America.
Support Team FSHD Cycling through a gift! Or learn more about how you can mobilize your friends and family to support Team FSHD Cycling and the FSH Society with our Team fundraising toolkit Continue reading
We just received news that the FSH Society has earned its ninth consecutive 4-star Charity Navigator rating!
We’re now in the top 1% of all U.S. charities! According to Michael Thatcher, President and CEO of Charity Navigator, “Only 1% of the charities we rate have received at least 9 consecutive 4-star evaluations, indicating that FSH Society outperforms most other charities in America. This “Exceptional” designation from Charity Navigator differentiates FSH Society from its peers and demonstrates to the public it is worthy of their trust.” A 4-star Charity Navigator rating is described as “Exceeds industry standards and outperforms most charities in its Cause.” Continue reading
The evening of the CureFSHD Gala on November 11, 2016, in Boston, Massachusetts, was one of those magical moments when we were overcome with gratitude for the generosity, courage, and life-affirming energy of our community. Over 250 patients, families, researchers, doctors, and benefactors had gathered to celebrate the FSH Society’s 25th year. We premiered the short documentary, “Into the Light,” which chronicles the long, arduous journey that has brought us from a world where FSHD and those who live with it were in the dark, to a place illuminated by knowledge and hope. Continue reading
Produced for the FSH Society’s 25th anniversary, our new documentary tells the story of how the Society’s work has led to the discovery of the genetic cause of facioscapulohumeral muscular dystrophy and brought patients out of the darkness into the light. We premiered the film at our CureFSHD gala on November 11.
To all the patients, families and friends who have supported the Society through the years, this is your story. Please share this with others to help them understand what FSHD is, the great progress that has been made, and how their support can lead to a brighter future for tens of thousands of patients.
If you are a Federal employee, you are most likely aware of the Combined Federal Campaign, or CFC. It is the official workplace giving campaign of the Federal government.
Pledges made by Federal civilian, postal, and military donors during the campaign season support eligible nonprofit organizations that provide health and human service benefits throughout the world.
How can you help? If you are a Federal employee or know someone who is, please consider directing your support to the FSH Society when making your pledge to the CFC. Our CFC number is 10239. Continue reading