Executive Director

Executive Director

Cerebral Palsy Alliance Research Foundation

New York, NY   |   December 18, 2020

Cerebral Palsy (CP) is the most common physical disability in children and results in a lifelong condition affecting the movement, posture, and speech of more than 18 million people worldwide. One in 323 babies in the United States are born with CP. One in three cannot walk, one in five cannot talk, and over 80% live in chronic pain every day. Cerebral Palsy Alliance Research Foundation (CPARF) is changing this narrative. By bringing together the best and brightest minds from science, technology, business, and philanthropy, the Foundation is unlocking the mysteries of CP at a rapid pace.

CPARF was proudly established in the US in 2015 to fund the world’s best research to treat, prevent, and ultimately find a cure for CP. CPARF works closely with Cerebral Palsy Alliance (CPA) in Australia, the largest disability service provider in Australia and a global leader for CP research. Since 2005 when Cerebral Palsy Alliance established its Research Foundation, more than $50M has been granted to research projects globally across Prevention, Early Detection, Stem Cells, Chronic Pain, Genetics, and Technology. CPARF has itself given out about $3 million in grants. The goal of CPARF is to build upon the significant accomplishments to date to achieve exponential growth in fundraising and accelerate scientific breakthroughs for CP.

CPARF has quickly established itself, leveraged by its major fundraising initiative STEPtember, which is a fast-growing peer-to-peer fundraiser. This is a global health/wellbeing and fitness challenge that runs in eight countries worldwide and challenges individuals in corporations to exercise up to 10,000 “steps” a day for 28 days in September each year. Over 350,000 participants have taken part globally and the event has raised over $40M for CP. The fourth annual U.S. STEPtember campaign in 2020 involved more than 12,500 participants from 160 corporations, including companies such as UBS, PwC, Wix, Blackrock, Kirkland & Ellis, and Nextstar Media, and raised $1.65M. The 2021 campaign in the US is targeted to grow significantly above the 2020 results.

CPARF has a team of nine talented and highly motivated professionals. It has a very engaged Board, as well as a Council of Governors which is a non-governing arm of the foundation comprised of senior professionals dedicated to mobilizing their networks to help fundraise. For more information on the Cerebral Palsy Alliance Research Foundation please visit its website.

The Opportunity

CPARF is seeking a passionate, highly qualified Executive Director to lead the organization into its next phase of growth and impact. The Executive Director reports to the CPARF Board of Directors (four U.S.-based and two Australia-based members). The Executive Director will also work closely with the CPARF Council of Governors.

The Executive Director will be tasked with building upon the growing success of CPARF, expanding its public profile in the U.S., building a Scientific Advisory Council, and with the help of an influential and highly engaged Board and Council of Governors, building a sustainable future for CP research.

The right individual will be energetic, strategic, and creative, demonstrating the highest level of professionalism, passion, empathy, and diplomacy.

Key responsibilities of the role include:

Strategic Leadership and Planning

  • Foster a positive culture and effective teamwork among the organization’s staff, Board/Governors, scientific community, and corporate & funding partners (including its Cerebral Palsy Alliance counterparts);
  • Collaborate with the Board on a range of strategic initiatives, including oversight of the organization’s vision, strategic direction, and business development/fundraising model; identifying and orienting new Board members; supporting governance activities; and building the CPARF brand;
  • Establish and foster productive relationships and partnerships to advance CPARF’s research agenda, mission, and fundraising resources;
  • Engage the organization’s Board/Governors, sponsors, funders, and partners to mobilize a coordinated and ambitious agenda for the CP mission;
  • Help assemble a Scientific Council of prominent CP researchers and scientists in the U.S.;
  • Represent CPARF as a key catalyst and relationship/partnership “broker” for CP research;
  • Oversee the planning, implementation and evaluation of the organization’s programs, events, and services;
  • Engage with staff, Board, industry colleagues, and partners as appropriate to identify and develop new programs and/or program partnership opportunities that further the organization’s mission.
External Relations and Fundraising
  • Serve as CPARF’s lead fundraiser, working with the Council of Governors to develop and maintain productive relationships with high-priority major donors and funders, both existing and prospective;
  • Develop and implement a range of effective fundraising strategies for CPARF including helping to identify and attract high-profile individuals/celebrities as active ambassadors for the cause, and provide regular updates to the Board on the status of fundraising initiatives and strategies;
  • Oversee the strategy and execution of STEPtember, currently the primary fundraising initiative in the U.S.; further develop related “peer-to-peer” initiatives such as “Move4CP”, and implement new ones to diversify revenue throughout the year;
  • Establish a major donor program across high-net-worth individuals, foundations, and corporations with a vested interest in CP;
  • Appropriately leverage relationships and resources of the Board/Governors and encourage its members to actively participate in fundraising activities;
  • Ensure the development and implementation of an effective marketing, branding and communications strategy for the organization;
  • Build compelling cases for support and relevant materials to support fundraising activities – this will involve working closely with relevant scientists to develop high-impact research projects which have the scale and scope to make a significant difference to prevent, treat or cure CP; “Thought-to-Speech”, which is an ambitious project to allow non-verbal people to communicate, is a good example;
  • Develop and manage all U.S. PR, social media and communications plans to build brand presence;
  • Promote the organization and cultivate the organization’s brand through speaking engagements and strategic participation in relevant conferences, events, and projects.
Organizational Management and Team Leadership
  • Lead and grow a highly successful team, providing ongoing coaching, guidance and support to staff members, ensuring high levels of performance;
  • Support a culture of collaboration, transparency, trust, and accountability, in which team members understand their role in helping to achieve CPARF’s overall mission and are held accountable for their responsibilities;
  • Provide strong operational and financial oversight, including building sound budgets, managing expenses and setting “best-in-class” human resources practices and policies, with particular attention to diversity and inclusion;
  • Ensure that overall financial and legal controls and procedures are in place and compliant with all regulatory requirements;
  • Work with staff and the Board to prepare a comprehensive annual budget, administer funds, monitor cash flow, and assist in the preparation of an annual audit;
  • Provide the Board with quarterly and annual financial and operational reports;
  • Ensure that sound accounting procedures are followed, and that the organization complies with all taxation, non-profit status, state and federal reporting and other applicable statutory or regulatory requirements.
Candidate Profile

The Executive Director must be an experienced, innovative and collaborative leader with compelling presence and exceptional communications and relationship building skills.

The ideal candidate will possess most, if not all, of the following attributes and competencies:

  • Experience as a senior leader in a mission-driven and/or non-profit environment, including demonstrated ability to lead and grow teams and to develop and implement strategies that result in measurable impact;
  • Experience raising funds from individuals, foundations, corporations, and other organizations or directly transferrable experience;
  • Demonstrated track record of expanding the scope, impact, and visibility of an organization or significant initiative;
  • Excellent communications skills, including the ability to articulate CPARF’s mission and work in a clear and inspirational way to a wide range of audiences;
  • Strong management and coaching skills, with demonstrated ability to achieve high levels of performance and outcomes through management and influence; a reputation for leading with integrity and transparency and making sound management decisions with the input of appropriate stakeholders;
  • Passion for and commitment to the mission of CPARF.
Contact

Trisha Sutrisno and Amber Gomes of Koya Partners have been exclusively retained for this search. To express your interest in this role please submit your materials here or email [email protected] and [email protected] directly. All inquiries and discussions will be considered strictly confidential.

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The Cerebral Palsy Alliance Research Foundation is an equal opportunity employer and strongly encourages applications from people of color, persons with disabilities, women, and LGBTQ+ applicants.

About Koya Partners

Koya Partners, a part of the Diversified Search Group, is a leading executive search and strategic advising firm dedicated to connecting exceptionally talented people with mission-driven clients. Our founding philosophy—The Right Person in the Right Place Can Change the World—guides our work as we partner with nonprofits & NGOs, institutions of higher education, responsible businesses, and social enterprises in local communities and around the world.

For more information about Koya Partners, visit www.koyapartners.com.