SkyMiles Fundraiser and Silent Auction at the Glenn Hotel, May 6
Fibrodysplasia Ossificans Progressiva, or FOP, is an extremely rare genetic condition characterized by progressive heterotopic ossification of much of the body’s soft tissue. In laymen’s terms, many of the body’s muscles, tendons and ligaments turn to bone, ultimately disabling the individual.
There are about 700 confirmed cases of FOP in the world, however, one of them is part of the extended family of Clayton State University, a circumstance that has motivated Dr. Melanie Poudevigne, director of Health & Fitness Management in the University’s College of Arts & Sciences, and several other Clayton State people, to become involved in both the efforts to find a treatment/cure, and the life of a 10 year old boy in South Africa.
Damian Fredericks is the 10 year old son of Joseph and Freda Fredericks, of Durban, South Africa. His brother, Leighton Fredericks, is one of the stars of the Clayton State soccer team that went to the NCAA Division II Elite Eight last fall. Earlier this year, Damian Fredericks was diagnosed with FOP. Despite this devastating diagnosis, he remains a bright, happy, inquisitive boy who loves playing cricket and soccer, eating lasagna, learning about aircrafts and fast cars, and playing with his playstation.
Although FOP has, at this time, no known cure, researchers at The Center for Research in FOP and Related Disorders at The University of Pennsylvania School of Medicine in Philadelphia, the only laboratory in the U.S. dedicated to FOP research, have announced the discovery of the FOP gene in Nature Genetics in April 2006. Further, in April 2011, in Nature Medicine, colleagues and collaborators at The Children's Hospital of Philadelphia, identified a new and powerful class of compounds that seemed to provide an effective treatment for FOP in mice, thus suggesting therapeutic potential in humans. The head of The Center for Research in FOP and Related Disorders is Dr. Frederick S. Kaplan, of the University of Pennsylvania School of Medicine.
Poudevigne, herself a respected medical researcher, is devoted to both helping find a treatment for FOP and fulfilling two of Damian Fredericks’ wishes… he would like to meet Kaplan, and watch his brother play soccer for Clayton State.
Towards these goals, Poudevigne has teamed up with the Glenn Hotel in downtown Atlanta (110 Marietta St., NW) for a special fundraising event for IFOPA, the International Fibrodysplasia Ossificans Progressiva Association (http://www.ifopa.org/) and Damian Fredericks. The event, “Teamwork Makes the Dream Work: Go the Extra Miles!” will be held in the SkyLounge at the Glenn Hotel from 5 p.m. to 7 p.m., on Friday, May 6. Ten percent of all sales at the SkyLounge during those two hours will be donated to IFOPA.
“The Glenn Hotel is a strong believer in being a good community partner and they are very proud to be involved in such a worthwhile cause,” says Poudevigne.
In addition, a silent auction will be held in the SkyLounge during the same time, with the funds raised also going to IFOPA. The auction is sponsored by Atlanta’s 10 degree south and Pastis restaurants, the American College of Sports Medicine, NFL player Marlin Jackson, and designer Malcolm Fontier, among others. The event is marketed by W3 Promotions LLC, whose founder is Maggie Walsh, daughter of Clayton State Assistant Professor of Nursing Susan Walsh, and You Don't Have to Agree, Just Let it Be, whose founder is Clayton State alumnus Johnny Lara, a former midfielder for the Clayton State Lakers soccer team.
Thanks to Walsh, there’s a Facebook page and a webpage for the May 6 event… go to www.fordamian.com.
Poudevigne notes that the effort to bring Damian Fredericks to the United States is centered around a Delta Airlines Skymiles account. Individual’s donations of Skymiles will enable him to fly to Atlanta to meet Kaplan and see his brother play later this year. Delta Skymiles can be donated directly on site during the May 6 event at the Glenn Hotel, or individuals can donate their Delta Skymiles to the Damian Fredericks Skymiles account # 910-468-6192 at https://www.delta.com/skymiles/buy_transfer/index.jsp. In addition, individuals who do not have Skymiles accounts can buy them for Damian Fredericks at https://www.delta.com/skymiles/buy_transfer/index.jsp. The recipient email for Delta Skymiles donations is firstname.lastname@example.org.
To donate and learn more about the efforts to find a cure for FOP, log onto http://www.ifopa.org/en/donate-now.html. According to IFOPA’s Becky Kaplan, this link will take the donor to a page to fill out their name and address. On this page there is also a required field for a comment.
“I would suggest that they put `Teamwork Makes the Dream Work’ or `in honor of Damian Fredericks’ in the comment field to aid in tracking the donations for this event,” she says. “After they fill out the form they are redirected to PayPal.”
Lara has also pledged the support of his own organization (http://www.justletitbe.org) hold another fundraiser for Damian Fredericks on Friday, May 27 at the Drunken Unicorne, 736 Ponce de Leon Ave., NE, Atlanta. The event will feature Atlanta DJ Sydney Slain, Stiletto Effect and Eryn Woods.
W3 promotions started out as a web design company and has grown into a full-featured digital marketing venture. Walsh works with entrepreneurs, businesses, and creatives to take their vision online and put it into the hands of the people who will care about it most. You Don't Have to Agree, Just Let it Be is non-profit that focuses on promoting the idea that the differences that make each of us individuals should be embraced and not ridiculed.
For more information regarding the Glenn Hotel event; please contact Poudevigne at email@example.com or www.facebook.com/Dr.Mela. For more information on IFOPA, contact Becky Kaplan at firstname.lastname@example.org.