National Tuberous Sclerosis Association Inc.

“Membership is available to any person who subscribes to the purposes and objectives of the corporation, without regard to race, religion, gender, sexual orientation, age, color, national origin or mental or physical handicap or disability. There shall be no limit to the number of members in the corporation. 1) there may be one or more classes of membership as determined by the board. 2) membership is not transferable or assignable.”

“The ts alliance is a membership-based organization, which means members help elect the board of directors. As such, members have a profound impact on the future of the ts alliance and all those living with tsc. Membership gives you an important voice and your involvement as a ts alliance member is important to us. The ts alliance membership program is composed of several levels designed to give you a choice in how you participate. Whether you choose the complimentary basic membership or the gold level, being a member means being a part of our unique and vital community. Because of allies like you, whose financial support is vital, the ts alliance has been able to make quantum leaps forward.”

“The form 990 is reviewed, in detail, by the board of directors audit and finance committees. Recommendations are made by the committee members for any changes/edits/additions. After those have been incorporated both committees vote whether to approve and then forward the 990 to the executive committee. The executive committee performs the final review and then votes whether to approve on behalf of the board of directors. A copy of the approved 990 is shared with the entire board.”

“Annually each member of the board of directors will receive notice of the organization's conflict of interest statement. Each member will be provided with a statement to make disclosure of any potential conflict of interest. If during the course of the year a potential conflict of interest arises that has not previously been disclosed, the board members will make written notice of a potential conflict of interest and recuse himself or herself from any discussions and votes in connection with the issue identified. Any time a members is recused from discussion on an issue, the minutes of committee meeting and board meeting will duly record such actions. For fiscal year 2013: the following conflicts of interest were disclosed: board member elizabeth thiele, md, phd, is employed at massachusetts general hospital, which received a $38,624 grant for the tsc natural history database.”

“The compensation committee reviews and approves the salaries of the president/ceo, chief staff executive officer, the chief financial officer, and any employee appearing on the form 990, in accordance with the tuberous sclerosis alliance bylaws. Such review and approval occurs initially upon hiring, upon annual reviews and whenever modified. The organization's executive remuneration has been structured to ensure that it: is reasonable; provides a competitive compensation program to retain, attract and reward key employees and achieves clear alignment between total remuneration and delivered business and personal performance over the short and long-terms. The compensation is reviewed by the compensation committee to ensure: - comparability, - proper review, and - substantiation in setting the compensation.”

“All governing documents, conflict of interest policy and financial statements are available upon written request.”

“Change in interest in affiliate 537,401.”

“The audit review process has remain unchanged from the prior year.”