CLIENT XXX July 2017 Building an effective Young Leaders Council & Aligning with the governing Board

Overview of Project

3 •A Young Leaders Council (YLC) was established as part of the Non-Profit X in 2015-2016 following the successful merger of the xxx Disease Alliance and Non-Profit X •The YLC was successful in attracting many successful members who are passionate about the organization, but the group has not been able to align around a shared purpose and align effectively with the mission and strategy of the Non-Profit X •The XXX has a mission-driven culture and has the benefit of many leaders and a Board who have committed their lives to research based solutions to fighting xxx disease and building a strong community of support •There is an opportunity to better embrace and align with that passion and support by better defining the purpose, roles & responsibilities, structure, and recruitment & membership strategy for the Young Leaders Council Overview of project

4 Scope 1. Board Purpose: Review the Board’s purpose, roles and responsibilities of the YLC 2. Board Structure: Benchmark other companies structures and develop a new structure for the YLC 3. Board Roles: Define the roles & responsibilities of the Board, its leaders, committees and any committee leader roles 4. Board Processes: Review governance processes around recruiting, Board membership and commitments Focus of Project Deliverables ➢ Purpose: Defined purpose and role of YLC Board ➢ Overall Recommendations: Summary of key findings from interviews and recommendations on ongoing improvements to consider ➢ Role Descriptions: Updated roles and responsibilities for all Board leadership positions ➢ Board & Committee Structure: Agreed upon structure for the YLC Board including committees and their roles and responsibilities ➢ Membership Requirements & Process: Updated processes around recruitment, membership, Board size and commitments ➢ Onboarding Documents: To co-develop “onboarding” document with XXX around history, mission, culture and values of the organization

5 ✓ April 6th: Kick-off call to align on scope and next steps ✓ Finalize scope and timeline and identify project sponsors from XXX ✓ YLC Co-Chairs to Finalize an updated commitment & membership requirements document. Get feedback from XXX Board members and finalize Current Step: ✓ During YLC meeting on April 29th, update members on new commitments and get them to renew their role and responsibilities to the Board Detailed Process 5 April May June ✓ Early May: Launch survey following YLC meeting ✓ Begin interviews of YLC and XXX Board members in addition to relevant XXX staff ✓ Complete survey mid-may and use findings to inform ongoing interviews and findings ✓ Benchmark against other relevant Young Leader Boards in New York (e.g. America Need You YLB) ✓ Review findings from interviews and develop initial draft of findings • Review findings with project sponsor and YLC co-chairs and other relevant stakeholders. Update as needed • Finalize findings & recommendations and implement any immediate actions • Paul and YLC sponsors To present findings to XXX Board in-person (date TBD) • XXX Board to align, offer suggestions and sign-off on next steps • Mid-Summer: Debrief findings with YLC

6 Interviews Completed • Names removed

Survey Findings

8 Most members of the YLC sees its role as amplifying the impact of XXX while also being a source of support, education and outreach for young professionals, students and other young people battling the disease Survey Findings: Mission & Strategy of XXX Support the Mission of XXX Be a voice and offer support for the “next generation” of xxx • Fundraising • Education • Awareness • Support to young professionals & students • Outreach to the community • Events in NYC + LOGO

9 Awareness & Education Survey Findings: The YLC is highly motivated in three areas Source: YLC Survey Fundraising & Research Support & Outreach “I hope that we can help XXX in their mission in the areas of education and fundraising to help further the incredible research and other initiatives” “The lack of scientific vigor and funding that surrounds xxx & TBD is truly astounding. I believe that through funding research and raising awareness, xxx will gradually become less politicized” “I am passionate about this disease and want to do everything in my power to make sure that no one else has to endure what I endured” “I'm passionate about increasing public awareness for xxx” “I am passionate about educating our youth in high schools and colleges” “…we can work to support the mission of XXX and bring their messaging to a younger audience, specifically college campuses”

10 Survey Findings: Board Size Source: Survey Results YLC Board Size • The YLC feels there should be an executive committee of about 5-6 people • Total board size of 20-25 people Recommendation: Aim for 25 people, assuming some may not stay engaged 5-6 Executive Committee 20-25 Total Board Size Survey Results from YLC: America Needs You’s Young Leaders Board targets ~30 people, assuming 50% will be active at any time Benchmarking

11 Survey Findings: YLC Mission and Role Source: Survey Results

12 Survey Findings: Lowest to Highest 12 Name Range Average The XXX Young Leaders Council has appropriate guidance and support from the XXX Board and the broader organization. 2-9 6.00 The Structure of the XXX Young Leaders Council is appropriate. 2-10 6.33 The YLC works well together as a team 3-10 6.80 I have clarity around what I am personally expected to contribute to the YLC 1-10 6.93 There is a clear understanding of the XXX Young Leaders Council mandate and responsibilities. 4-10 7.07 I have received equivalent benefits from being on the YLC relative to the time and effort I have put into the organization. 3-10 7.27 I have a strong understanding of my personal role and commitments on the XXX Young Leaders Council. 2-10 7.27 The YLC understands and is aligned with the long-term strategy and mission of XXX. 4-10 7.47 The combination of all the members experiences and backgrounds are relevant and helpful to the XXX Young Leaders Council. 5-10 8.67 The Young Leaders Council should incorporate an executive committee composing the co-Chairs and multiple committee leads and have a broader group of YLC members who will be required to join a committee 5-10 8.80

13 Survey Findings: Individual Questions Source: YLC Survey Very Accurate Very Inaccurate

14 Survey Findings: Individual Questions Source: YLC Survey Very Accurate Very Inaccurate

Recommendations: Governance & Structure

16 XXX is Dedicated to: • Finding a cure and accurate test for xxx disease • Educating physicians and the public about the dangers of xxx. XXX has gained national prominence for its commitment to changing the course of xxx disease through: • Funding ground-breaking research • Expanding education programs for the general public and physicians. XXX’S Goals are to: • Serve as an information resource for current medical research and findings with respect to xxx disease • Promote xxx disease education and awareness programs • Prevent the spread of the disease and other xxx illness • Support the development of accurate and affordable diagnostic testing • Find a cure for chronic or persistent xxx and xxx disease infections Non-Profit X Strategy Source: XXX Website

17 Purpose & Mission of the Young Leaders Council Purpose (Why does the YLC Exist?) The Young Leaders Council is focused on supporting the overall mission of xxx to find a cure for and increase awareness of xxx disease and other xxx illnesses. Mission (What does the YLC do?) The Young Leaders Council is a community of driven young professionals who have a personal attachment to the disease and are motivated to work on initiatives and fundraising to increase awareness and provide support and education for young professionals and the wider public. The YLC focus includes: • Sharing personal stories of council members and amplifying the messages of xxx, especially through social media • Supporting xxx fundraising efforts for local and national events, as well as creating events in the New York metro area focused on young professionals • Serving as a support network and fostering a community of young professionals and students fighting xxx disease • Piloting initiatives, education, and outreach events at the local level to be scaled nationally • Developing a pipeline of future xxx Board and community leaders

18 Mission • YLC members commit to supporting the Mission of Non-Profit X (“xxx”) through its efforts to educate the public, specifically young people, on the dangers of xxx. xxx is a mission-driven organization established with the foundation of funding research based solutions and promoting education to support the eradication of xxx disease. Membership Term • You are committing to a two-year membership term as a member of the Young Leaders Council of the Non-Profit X. Given your commitment and attendance at meeting and events, you will be eligible to re-apply after two years for an additional term. Fundraising & Project Commitments • The YLC will be responsible for fundraising as a group in the amount of $10,000 total for the 2017 calendar year. Each Council member must contribute to fundraising. The YLC will utilize these funds to support its initiatives, which include promoting xxx disease education through outreach programs. Committees • Each YLC member not holding a position on the Executive Committee will be required to join a Sub-Committee. Each Sub-Committee will have a chairperson that will hold a 1-year term. Each Sub-Committee will establish a meeting schedule and grant positions to members that require different levels of responsibility. The YLC Sub-Committee chairperson will lead committee projects and must be responsible for holding all members accountable for participation within the committee. YLC Requirements (1/2)

19 Attendance • Each YLC member is required to attend a minimum of 3 out of 4 quarterly meetings and 4 Committee member meetings either in person or by phone to remain an active member of the Council. The 4 quarterly meetings will be scheduled on an annual basis. For remote council members it is strongly encouraged that at least 1 quarterly meeting be attended in person per year. Membership will be reviewed annually to confirm that Council members are participating in quarterly and committee meetings. The Executive Committee and Non-Profit X reserves the right to remove a Council member if they are not meeting their commitments. Other requirements • Each YLC member must sign a nondisclosure agreement. Initiatives and any outreach on behalf of Non-Profit X must receive the consent and approval of the YLC Executive Committee and Non-Profit X. • In consenting to these terms each YLC member is agreeing to serve as an ambassador for Non-Profit X. All members must disclose any association with other organizations (non-profits, events) that may be perceived as a conflict of interest in affiliation with xxx. Should members have an opportunity to engage in a public forum, it is expected that he or she will represent Non-Profit X and the YLC. YLC Requirements (2/2)

20 YLC Roster July 2017 Confidential Information Removed

21 Executive Team Board Structure Leadership Team Education & Outreach Chair Fundraising & Engagement Chair Events Chair Council Member Council Member Council Member Council Member Social Media Communication Council Member Council Member Council Member Council Member Council Member Council Member Roles # of People Give / Get Term Leadership Team 3 Members $500 Two-year terms (starting in June) Executive Team (includes the Leadership Team members) 6 Members (3 committee chairs, 3 Leadership Team members) $500 Two-year terms (starting in June) Council Members Up to 25, including exec. committee $500 Two-year terms (starting in June) YLC Fellows 1-25 Members $250 1-year, renewed annually A - Co-Chair B - Co-Chair C - Vice-Chair Fellow Fellow Fellow Fellow Fellow Fellow Fellow Fellow Fellow Fellow

22 YLC Fellow: Expanding our reach Purpose: To reach a broader range of people (both age and geography), the fellow position creates an opportunity for students and young professionals to volunteer and support xxx through involvement in the YLC. Requirements • 16+ age limit • Can join at any time (terms renew in June if appropriate) • Must donate $250 (give or get requirement) • No Board requirements • May volunteer for committees if interested • Other opportunities to get involved as appropriate

23 Executive Team Roles & Responsibilities Roles Roles & Responsibilities Term Co-Chairs • Sets agenda for Board • Ensures success of YLC • Facilitates in-person Board meetings • Main point of contact to xxx • Makes Board decisions with support of xxx • Model members of board, sets example for performance and participation Serve staggered two-year terms (a new co-chair is appointed annually) Vice Chair / Nominating • Leads recruiting & onboarding of new members • Supports Co-Chairs in Board leadership 1-year term, with the option to serve an additional year, at the discretion of the co-chairs Fundraising & Engagement Chair • Leads fundraising & engagement committee • Tracks individual and overall fundraising goals • Provides fundraising tools for members • Ensures Board is engaged & committed 1-year term, with the option to serve an additional year, at the discretion of the co-chairs Events Chair • Leads events committee, point person for all events • Ensures all events are executed successfully • Works with xxx to maximize resources 1-year term, with the option to serve an additional year, at the discretion of the co-chairs Education & Outreach • Leads education & outreach committee • Supports community and educational outreach, especially to young professionals and students 1-year term, with the option to serve an additional year, at the discretion of the co-chairs Nominating (ad-hoc) • To be formed annually prior to recruitment (spring for June 2017 start) Vice Chair to lead committee with annual appointment of three additional members

24 Committee Structure Committee Education & Outreach Events Fundraising & Engagement Nominating (ad-hoc) Chair Non Profit Contact Council Members Requirements for Each Committee: ● Having at least four meetings (phone and/or in person) per year with expected attendance of all members ● Having at least 1 major initiative or event per year (event / project leader can be a different person than the chair of the committee) ● For any event submit a specific budget and any specific needs required of xxx ● For 2017: Aim to have one event completed or in pipeline by end of 2017

25 Late March • Form ad-hoc Nominating Committee head by one co-chair, vice chair and three additional council member Early April • Recruit people to apply through networks (YLC, xxx, social media) • Steer people to online application, commitment survey and essay questions • To interview with one Nominating Committee member and 1 xxx Board member • Interview with a xxx Board member By End of May • Nominating committee to gather feedback and admit members June Board Meeting • New members to join at annual June Board meeting Annual Board Recruiting Process

26 Summer 2017: Social / informal YLC event Quarterly YLC Meeting: Saturday August 26th, Thursday September 7th, Saturday September 9th, Sunday September 10th xxx Board Meeting: September 13th 2017 Quarterly YLC Meeting: Saturday, December 2nd xxx Board Meeting: December 13th * Committee meetings to be handled within each committee * Calendar 2017 to be posted in last 2017 Remaining 2017 Calendar