Basal Cell Carcinoma Nevus Syndrome

“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 of trustees budget committee; and then subsequently to the entire board. The board was provided a period of time to review the return prior to the filing of the form 990. A board officer signs the 990.”

“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 requires 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 participates in development of program objectives and ensures those objectives are being met and evaluates the performance of the executive director. Compensation is based on 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 publically supported area mission-comparable non-profit 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 can also be found on several publicly-accessible websites.”

“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. It is abundantly apparent that our programs and services are effective efforts in order to educate affected individuals, families, caregivers and medical professionals and provide a vital link to accessing: current treatment options, emotional support to better manage the burden of chronic illness, and information on currently available clinical trial opportunities. Expenses = $90,971, including grants of $5,000. 2."generations: registry4life": this program, funded by grants from genentech and pellapharm, is the development of a data repository of disease-specific information on people afflicted with basal cell carcinoma nevus syndrome. Registrants complete a 300-question interactive questionnaire that collects and organizes data related to their condition and quality of life. Expenses = $15,819”