Basal Cell Carcinoma Nevus Syndrome Life Support Network

“Alan roth kathlyn roth trustee trustee spouse”

“Prior to filing, the form 990 was presented to the executive director for review. After modifications were made to the return post-review, the full form 990 was electronically forwarded to the board. The board was provided a period of time to reviewthe return prior to final filing of the form 990. A board officer signs the 990.”

“Each year, the board members are interviewed by the executive director with regard to potential conflicts of interest as defined in the organization's conflict of interest policy. Among other things, the policy makes clear that all decisions of the board, officers, and employees of the organization are made solely on the basis of a desire to promote the best interest of the organization and the public good. The conflict of interest interview requeires board members to identify to the best of their knowledge affiliations with organizations that may be potentially related to the financials or other substantive operations of the organization. They are also asked to identify circumstances involving either themselves, or a member of their extended family, that may be construed as a conflict of interest. At the staff level, the organization's personnel also ensure that there are no conflicts of interest when considering the engagement of a new vendor. If a potential conflict is identified, appropriate steps are taken to both assess the nature of the potential conflict and, subsequently, to ensure that the possibility of an actual conflict is mitigated. Such mitigation is managed and the letter and spirit of the conflicts policy are upheld.”

“The medical advisory board (nonvoting) chair quarterly and annually evaluates the performance of the executive director. Compensation is based on performance and compared to other area mission-comparable organizations of similar size. Compensation for staff within the organization is determined by the executive director. The level of compensation is set based on performance and in relation to other area mission-comparable organizations of similar size. This compensation is a component of the budget, which is reviewed and approved by the finance committee and also by the board as a whole.”

“The organization's governing documents, form 1023 and form 990 are made available to the public upon request. The form 990 can also be found on several publicly-accessible websites.”

“The mission of the bccns life support network is to: focus on the early diagnosis and treatment of children evidencing an initial onset of bccns; develop information about the medical conditions and disorders experienced by those living with bccns; share this information with clinics and healthcare providers treating bccns patients, and other similarly affected populations; engage affected individuals and their families, caregivers, colleagues, and schools in creative learning opportunities to effect an optimum quality of life and attain maximum personal potentials through informed communication; strengthen the capacity of patients and their families to manage their disease; and establish and foster a network of medical professionals actively engaged in advancing the welfare of the bccns patient community.”

“"american society mohs surgeons (asms); continuing education "aad & aada research agenda consensus conference ""one voice against cancer" development and advocacy in conjunction with: american academy of dermatology; american cancer society; lance armstrong foundation and over 30 other organizations, held in washington, dc. Bccns network hosted two well-received, enthusiastically attended, regional meetings in orlando, fl and burton, oh in 2014, with grant support from genentech. The "you are not alone" outreach program encompassed people nationwide and globally, especially targeting under-served populations and at-risk communities - those who would otherwise lack access to reliable information concerning how to manage and navigate this complex orphan condition. Through attendance at the above mentioned regional member/professional meetings, we had direct contact with over 1,200 distinct individuals; over 13,500 random attendees. The educational programming reaches thousands more through distribution of disease specific materials, clinical trial participation, medical professional conferences, online social media avenues (facebook, twitter, linkedin) and direct contact via telephone, e- mail, website and in- person interaction. We began the process of upgrading our website to ensure that it is more user and mobile friendly. Hundreds of persons with advanced and metastatic bccs are now benefitting from newly fda approved hedgehog inhibitor drugs both through clinical trials and prescription use. We initiated three new research programs in 2014 including: illuminating novel targets for bcc and scc cancer therapy, dr. Addy alt-holland, tufts university; bccns clinical consortia & patient registry, dr. Joyce teng, stanford university & dr. Amy paller, northwestern university; a research study for the application of complex adaptive systems research methodology to basal cell nevus syndrome, dr. James solomon, ameriderm research & the university of central florida. The network conducted three nation-wide surveys for pediatric bccns; adults with bccns; and melanoma and indoor tanning. Post conference and regional meeting evaluations were completed by 87% of attendees and offered insight for future programming and needs assessment. Satisfaction was 90 plus in 85 percentile of attendees for all venues. The network developed, produced and distributed collateral materials, newsletters, educational articles, information on clinical trials, online forum and social media avenues which are all available on the network's organizational website. The website received 9,253 unique visitors and 13,610 visits with 46,439 page views. Executive director, kristi schmitt burr, serves as a member of: food and drug administration (fda) patient representative; commission on dental accreditation (coda) public member; the congressionally directed medical research program for the dept. Defense as a consumer reviewer for grant applications; coalition of skin diseases, (currently serving as president of csd). Staff, subcontractors and volunteers continue to build constituent relations, manage day-to-day operations, and coordinate all communications, schedule appointments, and triage member needs for services. The support network is a member in good standing of: dermatology nurses association; national organization for rare disorders; coalition of skin diseases; and genetic alliance. Our program directors and staff have expanded interactive programming and services by connecting affected individuals, their families, caregivers, and the professionals who care for them through the creation of didactic learning sessions. Successful collaboration has allowed us the opportunity to: 1.focus on the early diagnosis and treatment of children; 2.author & publish the quarterly advocate newsletter which is distributed 4 times/year both electronically and hard copy to 1879 families, caregivers and health care professionals who turn to us for support and assistance; 3.augme”

“An unrelated entity employs the individuals who direct the activities of the organization and therefore there are no w-2's issued. Compensation paid by the unrelated entity is reimbursed by the organization on a regular basis. Payroll taxes on this compensation are remitted to the tax authorities by the unrelated entity. Remibursements for compensation is classified wihtin the "contracted services" line on 24a, page 10 of the form 990. Total 2014 compensation paid to the executive director was 22,000. Nontaxable fringe benefits provided amounted to 7,278.”