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-Goltz syndrome). The Network was organized and still operates toward the following objectives:
- To Focus particularly on the early diagnosis and treatment of children evidencing an initial onset of BCCNS;
- To Develop information about the medical conditions and disorders experienced by those living with BCCNS;
- To Share this information with clinics and healthcare providers treating BCCNS patients, and other similarly affected populations;
- To Undertake a collaborative approach to the diagnosis, treatment, prevention and cure of the disorders encompassed by BCCNS;
- To Engage affected individuals and their families, caregivers, colleagues, and schools in creative learning opportunities to effect an optimum quality of life and obtain maximum personal potentials through informed communication;
- To Strengthen the capacity of patients and their families to manage their disease;
- To Explore options for treatment, including participation in clinical trials, seminars, and classes, while advocating for this orphan condition, which is universally under-diagnosed, improperly diagnosed and largely unrecognized;
- To Establish and foster a network of medical professionals actively engaged in advancing the welfare of the BCCNS patient community; and
- To Involve local communities in high-impact quality of life services and policies through community mobilization, collaboration and advocacy.
The need for an organization that strived to raise awareness, advance research, and provide support for affected individuals and their families became acute to several leaders and the medical community, including Dr. Sherri Bale and the late Dr. Robert Gorlin. The Network was thusly 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 had nowhere to turn for proper medical advice. When she did find other people with the same syndrome, she was determined to save future generations from the same feelings of isolation and bewilderment. Working together with Eleanor Wilbur, the Schmitt family, and longtime friend, attorney Bill Ginn, she established the Network with the intent to seek out individuals and families affected by BCCNS/Gorlin-Goltz 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 developing personal coping skills. Shortly thereafter, additional smaller meetings were organized in various regions of the country that newly identified individuals and families could more conveniently 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 the opportunity to create their own plush animal companion to take with them to medical procedures or hospital stays, and the Sunshine Club, which sends cards to participating members for holidays, birthdays, surgeries, bereavement, support 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 in 2000 to include more than 1,800 people in all 50 of the continental United States and 25 countries around the globe. Since its inception, the Network has provided a number of annual retreats and regional meetings for affected members and their families, in addition to more than 100 presentations at national conferences of medical professionals and researchers.