Hundreds of thousands of people around the world suffer from FSHD but many – even those in the healthcare industry – have never heard of FSHD.
Gull Creek, Michigan (PRWEB) July 02, 2013
Michelle Mackay, the wife of retired Kellogg’s CEO David Mackay, has always been an active member of her community, but over the past several years, she has taken up a new cause – one that many people and physicians may never have heard of: FSHD.
Facioscapulohumeral muscular dystrophy (FSHD) is a degenerative muscle disease which affects approximately 500,000 people worldwide and between one and two percent of the population carries a genetic trait that places future generations at risk of FSHD. Triggered by an unusual genetic mechanism that was brought to light just three years ago, FSHD affects both sexes equally and has no particular racial, geographic or ethnic distribution. The disease causes a progressive loss, wasting and atrophy in all skeletal muscles, usually starting with the locations reflected in the name of the disease: face, shoulder girdle and upper arms. The severity of FSHD can vary greatly as some patients are asymptomatic or have minimal symptoms while others become wheelchair bound. Currently, there is no treatment.
The Mackays have worked with the FSH Society, a Massachusetts based non-profit that is a world leader in combating this form of muscular dystrophy, for quite personal reasons: Mrs. Mackay was diagnosed with FSHD in her twenties. For years, she was very secretive about the affliction and did everything in her power to hide her symptoms, but her perspective shifted after taking a major fall that dislocated her hip several years ago. Mackay has since become a vocal and active advocate in battling the disease and raising awareness.
“Something changed for me that day. I realized that hiding the disease was more painful than sharing my story,” said Mackay. “Once I began talking about life with FSHD, I found that people really wanted to listen – and more importantly, they wanted to help.”
Mackay and her husband will be hosting a festive event to raise awareness and funds for the FSH Society on Friday, July 5 at their lakeside home in Gull Lake, Michigan. The community is invited to attend the fundraiser, which will feature a spit roast, dancing, an auction and live music by Small Town Son. A donation of $75 will be accepted and all proceeds will go directly towards the FSH Society’s efforts to support patients and research on FSHD.
As a non-profit with a prestigious four-star rating and designation from Charity Navigator as one of America’s “Ten Charities Worth Watching,” the FSH Society has achieved a near perfect score in fundraising efficiency, accountability, transparency and more. Sponsors who have lined up to support the Mackay event include the Battle Creek Community Foundation, Beam, Inc., EPI Printers, Gilmore Keyboard Festival, Grand Rapids Art Museum, Heather Robilliard Ski Adventures and Silver Star Mountain Resort and Peruvian Connection.
Individual supporters include: Bob Roskam, Jim and Sharon Jenness, Mary Whalan , Tim and Robyn Gulstrom, Randy and Stacey Tilbury, Peter and Janet Moait, Tim and Anne Mobsby, Linda Markham, Dave Dvorak, Trish Francis, Ian and Suzanne Reimer, Steve Hyde, Dave and Michelle Reis, Margaret Bath, Ronda Stryker, Bill and Barbara Parfet, Rob and Barbara Steele , Jane Gram, Mary Ann DuBrule and Ben Jackson.
“Hundreds of thousands of people around the world suffer from FSHD but many – even those in the healthcare industry – have never heard of FSHD,” said David Mackay. “We hope that our event, and many like it across the country, will help raise awareness about this disease. We are fierce in our resolve and will not stop until there is a cure.”
For more event details and registration information, please visit: http://www.fshsociety.org/pages/conELakeside.html.
About the FSH Society
The FSH Society, founded in 1991 by two FSHD patients, is a world leader in combating muscular dystrophy. The non-profit has provided millions of dollars in seed grants to pioneering research worldwide, creating an international collaborative network of patients and researchers. The FSH Society seeks to serve as a source of information and support for all patients and families with FSHD; act as a driving force in the development of research directed towards treatments and ultimately a cure; and bring support to patients and research for FSHD through effective engagement of governmental and private sector organizations and entities. For five consecutive years, the Society has received the Charity Navigator’s four-star rating, the highest distinction held by less than four percent of non-profit organizations in the country. The FSH Society offers a community of support, news and information for FSHD patients and families through its website at http://www.fshsociety.org.
About Facioscapulohumeral muscular dystrophy (FSHD)
Facioscapulohumeral muscular dystrophy (FSHD) is a degenerative muscle disease for which there is currently no treatment. FSHD effects approximately 500,000 people worldwide and between one and two percent of the population carries a genetic trait that places future generations at risk of FSHD.