This September and early October, the FSH Society will host its new signature fundraising event, the Walk & Roll to Cure FSHD in five communities from coast to coast. These Volunteer Leaders are paving the way for their communities to raise funds and increase awareness!
5 Brave Walk Pioneers have agreed to attend monthly training sessions, beta-test all of the fundraising materials, the software platform, instructions, and procedures, offering their feedback and insight as they prepare to host their events. Because of their participation and leadership, we will be able to launch our signature Walk & Roll fundraiser in many more communities in 2019.
But for now, we thought you might like to know a bit more about these awesome individuals who have stepped up to make a big difference for us all!
Colorado Walk & Roll to Cure FSHD
September 8, Castle Rock, CO
“It’s been truly wonderful and inspirational connecting and empowering other families in the State of Colorado affected by FSHD… My hope is to see the Colorado Walk & Roll continue to expand and to reach out to more FSHD Colorado families. My Life Purpose is that no one else will ever hear the words I heard 7 years ago, “You have Facioscapulohumeral Muscular Dystrophy and there is NO treatment and NO cure”. The Colorado Walk & Roll won’t stop until the Cure is found.”
Columbus Walk & Roll to Cure FSHD
September 15, Dublin, OH
“Our son called last August 2017 from their home in Colorado to tell us he had been diagnosed with FSHD. Six weeks later my husband was diagnosed with FSHD. I’m still in a daze. I want to not only raise money for the FSH Society but raise awareness of a disease very few people have ever heard of. My ultimate goal is to raise awareness of this disease through the Walk & Roll before having to shut it down in 5-7 years because brilliant researchers have found a way to CURE IT!”
Team Walk & Roll to Cure FSHD
September 16, Alameda, California
“I chose to take on this challenge to launch a Walk & Roll because I’d do anything to help the Society and find a cure. Because of this event, I hope to see more awareness. My hope is that through this event, we will raise the funds needed to find a cure.”
Pacific Northwest Walk & Roll to Cure FSHD
September 22, Payallup, WA
“My hope is that the community (both patient community and geographic) has more awareness of FSHD and understands that it takes community to make a difference. My hope for the future is that this Walk & Roll will outgrow my hometown and become a major event in the Northwest. I took on this challenge because I want to make sure that this mama bear does everything in her power to help find a treatment and cure for FSHD.”
Meredith Huml & her father, Raymond A. Huml
North Carolina Walk & Roll to Cure FSHD
October 7th, Cary, NC
“My hope is that because of our involvement in the walk, we will raise awareness of FSHD and MD. Eventually, leading to treatment or a cure. We need a cure, and I am passionate about being a part of finding it in any way I can.”
“I hope that we raise awareness of FSHD, that families and friends come together to support the participants and that we raise some money to help folks with FSHD. My hope for the future is a disease-modifying treatment for FSHD by 2025 and ultimately, a cure.”
The official FSH Society Chapter Program will launch in mid-June, 2018. Stay tuned for more information about this new program and how you can participate!