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The mission of the BCCNS Life Support Network is to promote universal access to the most effective and appropriate treatments for individuals with Basal Cell Carcinoma Nevus Syndrome and to advance research into new treatments and, ultimately, a cure for BCCNS.
BCCNS Life Support Network is dedicated to providing counseling and support services to children and adults manifesting the genetic disorder known as Basal Cell Carcinoma Nevus Syndrome (BCCNS, NBCCS, or Gorlin syndrome). The Network was organized and still operates toward the following objectives:
The Basal Cell Carcinoma Nevus Syndrome Life Support Network was founded in February of 2000 by Kristi Schmitt Burr, an affected Ohioan whose daughter (deceased) and son also have BCCNS. As a child Kristi hadn’t known anyone else with her condition; she’d had nowhere to turn for proper medical advice. When she did find other people with the same syndrome, she was determined to save them from the same feelings of isolation and bewilderment. Working together with a longtime friend, attorney Bill Ginn, she established the Network with the intent to seek out individuals and families affected by BCCNS/Gorlin Syndrome and to give them the tools they need to cope with their condition, as well as raise awareness of this orphan syndrome among medical providers.
In April 2001, the Network held its first member retreat in Aurora, Ohio. Those present were able to meet with other affected families, some for the first time; they also attended professional presentations on condition-related treatment options, clinical trials, and personal coping skills. Shortly thereafter, additional smaller meetings were organized in various regions of the country that newly identified individuals and families could more easily attend. The Network also implemented other programs to help foster a sense of community and security among members and their families, including the “Band Aide Buddy” program, which provides affected children with a plush animal to take with them to medical procedures or hospital stays, and the Sunshine Club, which sends cards to participating members for holidays, birthdays, surgeries, and other important occasions.
Having started with just a handful of members and an AOL Hometowns web page, the Life Support Network has grown from these humble beginnings to include more than 1,200 affected patients, families, and medical professionals. In 2003, the Network hired a full-time administrator to respond to the volume of incoming e-mails, written correspondence, and calls to its toll-free number, As a result, affected members and their families are able to call the Network office on weekdays and talk to a live person for emotional support, medical referrals, or answers to questions. They are also kept apprised of upcoming clinical trials and other events through the organization’s newsletter, web sites, and online forum.
Since its inception, the Network has provided 8 annual retreats and 35 regional meetings for affected members and their families, in addition to more than 40 presentations at national conferences of medical professionals and researchers. In 2005 the BCCNS Network and the St. Louis University Medical School coordinated a research colloquium in which more than 70 affected members and their families donated tissue samples and participated in multiple examinations, enabling researchers to gather a wealth of information that continues to provide valuable research data regarding this multi-faceted disorder.
The Network endeavors to link affected members with the best treatments for their symptoms while still preserving a high quality of life and preventing the morbidity that can result from more aggressive treatments. We maintain a database of experienced medical professionals to whom patients can be referred. In some cases, we are able to collaborate with other organizations and make arrangements for disadvantaged patients to receive needed procedures at greatly reduced cost.
The Network also collaborates with other non-profit organizations for the benefit of their members. These organizations include the Stowe Weekend of Hope, Camp Wonder (a service of the Children's Skin Disease Foundation), Camp Discovery (sponsored by the American Academy of Dermatology), and Positive Exposure. One of our members appeared in Heroes with a Thousand Faces, a Cleveland Clinic publication featuring people with facial differences.
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