Chief Executive Officer, The Les Turner ALS Foundation

VISION
A world free of ALS.

MISSION
To provide the most comprehensive care and support to people living with ALS and their families so they can confidently navigate the disease, and advance scientific research for the prevention, treatment and cure of ALS.

BACKGROUND
Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease that weakens the muscles we use to move, swallow, and breathe. It can, in some cases, also cause changes in behavior and thinking. The effects of ALS grow more severe over time and eventually become fatal. The average survival for someone affected by ALS is 2 to 5 years. There is no cure, yet. While technically considered a "rare disease," experts predict an individual's lifetime risk of acquiring ALS is about 1 in 300, by the age of 85. Approximately 32,000 people live with ALS in the US.

For more than 45 years, the Les Turner ALS Foundation ("the Foundation") has been Chicagoland's leader in research, patient care and education about ALS. The Foundation provides individualized care, local community support and hope through scientific research. The Foundation's Support Services team takes an individualized approach to ensure each person living with the disease receives the best quality of care and access to the most promising therapies, while its educational resources are available to all living with ALS.

The Foundation is recognized as one of the nation's oldest, independent ALS organizations. It has been a leader in building visibility for the disease locally, regionally and nationally. It is an independent 501(c)3 that is not affiliated with any other of the more than 70 ALS organizations nationwide but seeks opportunities and works collaboratively with many of them.

The Foundation began continuously funding ALS research at Northwestern University in 1979. In 1986 the Lois Insolia ALS Clinic opened at Northwestern Medicine, one of the first in the nation and the only in Chicago at that time. It is recognized as one of the nation's best multidisciplinary centers for ALS patients. The Clinic offers patients access to enrollment in clinical trials as well as access to the Foundation's coordinated support services. In 2014, the Foundation formalized its relationship with Northwestern and established the Les Turner ALS Center at Northwestern Medicine to integrate the research and clinical aspects of the ALS program. The Les Turner ALS Center at Northwestern Medicine is led by the most well-respected and successful clinicians and researchers in the field, advancing vital care and research in pursuit of life-enhancing treatments and a cure.

Since inception, the Foundation has raised over $100 million, directly and indirectly, to fight ALS. Through collaborative research and symposiums, the Foundation reaches the ALS community worldwide and is one of the founding members of the International Alliance of ALS/MND Associations, which provides support to patient-driven associations through networking and educational resources about ALS. Members of the Foundation staff as well as members of the Les Turner ALS Center regularly present at the International Symposium on ALS/MND, sharing their knowledge and experience with other ALS professionals from around the world.

The Foundation is governed by a dedicated Board of Directors made up of leaders from the business and civic worlds in Chicagoland including a physician who provides critical services to people living with ALS. All members of the Board of Directors have been personally touched by ALS. Some are family members of Les Turner, and some are living with ALS.

OPPORTUNITY
As a rare disease, ALS can strike roughly one in 300 people in their lifetimes, and as of today can only be treated symptomatically. There is no cure. ALS impacts people of all age, gender, socio-economic and racial backgrounds. Ensuring the Foundation works with a health equity lens including making services available for all affected by this disease is a major imperative for the Board and staff. To achieve this goal will require building visibility for the disease and the services offered by the Foundation in historically marginalized communities.

With an operating budget of approximately $3.7M, the impact of the Foundation belies the extraordinary impact the organization has made in both direct support to individuals living with ALS and their families in the Chicago area and its ongoing impact to basic science and clinical research of ALS. The Foundation provides educational programs that expand the reach around the country and internationally. Further, the Foundation is funding research at the ALS Center at Northwestern Medicine and advocating for clinical trials, legislation, and approval of essential drugs at the national level. As an example, the leadership of the Foundation was integrally involved in the recent FDA approval of Relyvrio, an exciting new drug that may extend the life of people living with ALS for up to 18 months. As an organization that regularly "punches above its weight," the Foundation stands out amongst peer organizations by providing this wide array of programs and services.

Since entering into an agreement with Northwestern University to create the Les Turner ALS Center at Northwestern Medicine, the Foundation has committed $19M to fund the Center over a ten-year period, including a $10 million endowment to be raised jointly by the Foundation and Northwestern. Currently, just over $5M has been raised toward the endowment goal. Ensuring that the funds are raised to fulfill this commitment is a major priority for the Board and the new CEO. Additionally, the ability to navigate and negotiate with the leadership of Northwestern, including the President of the University, the Dean of the Feinberg School of Medicine as well as the chair of the Neurology Department at Northwestern Medicine, is critical.

The Foundation is funded primarily through philanthropic support from individual donors, corporate sponsors, and a range of events including the ALS Walk for Life and the annual Hope Through Caring Gala as well as others. Continuing to increase the level of support for the work of the Foundation is essential. This will require continued focus on generating funds by identifying, cultivating and soliciting major individual donors and increasing support from foundations and corporate sponsors. Continuing to differentiate the Foundation from the many other ALS organizations will enhance fundraising efforts.

The mighty team of 19 staff members is a tremendous asset and deeply dedicated to the work of the Foundation. Ensuring retention of the team by continuing to provide strategic direction, support and professional development opportunities will be expected going forward.

A strategic planning process and development of a business plan will help guide achievement of future goals and direction. The opportunity for the new leader to partner with the Board to create a strategic plan is central to shaping the future direction and growth of the organization. The Board and staff see the strategic plan as a living document that will serve as a guide for the future direction of the Foundation without restraining the organization from being nimble and responsive to emerging developments and needs in this fast-evolving field. Developing goals and metrics of success for the staff will build ownership for the realization of the vision.

Under the leadership of the current CEO Andrea Pauls Backman, the Foundation has evolved to become a dynamic, robust leader amongst peer institutions. Her planned transition creates the opportunity for an experienced leader with the vision, gravitas and leadership talent to guide and grow the reach of the Foundation. The next CEO of the Foundation will help support the advancement of research efforts and access to promising therapies to help achieve the vision of a world free of ALS while providing education, care and support for those living with the disease.

POSITION DESCRIPTION
Reporting to the Board of Directors, the Chief Executive Officer is responsible for the oversight of the Foundation, including driving strategy, initiating and maintaining expansion initiatives, as well as building on existing relationships of the Foundation and developing new ones. This person will continue the tradition of identifying partners to maximize resources and enhance the quality of life for individuals living with ALS, their families and caregivers. An inspiring people leader, the CEO will bring a demonstrated commitment to diversity, equity, inclusion and belonging.

This includes supporting, developing and retaining staff, directly, and through, four talented direct reports, overseeing Support Services and Education, Operations and Administration, Communications and Marketing, and Development.

The CEO will assist the Board in the development and implementation of a strategic plan accompanied by a business plan. The selected candidate will work collaboratively with the Board Chair while leveraging the experiences of a diverse Board to achieve the mission of the Foundation. The CEO is the primary liaison with the Director of the Les Turner ALS Center at Northwestern Medicine. Working collaboratively to drive the strategic direction of the ALS Center, including grant making, high-level oversight of clinical operations from a patient advocacy perspective, development efforts geared toward fulfilling the current endowment obligation and increasing annual expendable funds for research and clinical care is a major imperative. The CEO will serve on the Center's Advisory Council and work closely with the development and neurology department leadership at the Northwestern University Feinberg School of Medicine to collaboratively achieve the stated goals of the Les Turner ALS Center at Northwestern Medicine.

The CEO ensures ongoing programmatic excellence, including program evaluation, consistent quality of finance, administration, fundraising, and communications objectives. The CEO will also recommend timelines and resources that are needed to achieve the strategic goals. To that end, the CEO will strategically engage Board and partner resources and will build relationships of trust with Northwestern Medicine, the ALS research community, funders, policymakers, private sector partners, other allies, and staff. The CEO must be able to build visibility for the Foundation by securing new partner relationships and becoming a strong public presence in the ALS space locally, nationally and internationally, with the goal of program expansion and enhanced profile for the Foundation.

Securing the operating and investment funds necessary to sustain current and future operations is a primary role for the CEO. The CEO will be responsible for raising funds to advance the mission and programs and for managing resources to achieve program outcomes and sustainability. This includes creating and sustaining relationships with major donors and funders. With strong communications and relationship-building skills, the CEO will be the face of the Foundation with research, academic and medical partners, funders, the media, and governmental entities.

This individual is responsible for the overall management and operation of the Foundation in compliance with Board adopted policies and with all applicable regulations and laws. The successful candidate will work diligently with Board leadership to cultivate a strong and transparent working relationship and ensure open communication about strategic direction and measurement of financial and programmatic milestones and goals. Cultivating new Board members whose talent, backgrounds, personal commitment, and fundraising abilities are congruent with the needs and mission of the Foundation is expected.

CORE COMPETENCIES

• Visionary Leadership with a capacity to translate vision into effective action and an ability to seek opportunities for strategic initiatives and new arenas for expansion and program development.
• Disease Advocacy deep understanding of disease advocacy coupled with a desire and an ability to closely follow and understand trends in ALS research, drug development, health equity, health literacy and clinical care.
• Strategic Management to enhance and lead a productive and sustainable organization.
• External Relations effectively represents the organization's goals and mission to people living with ALS, the scientific community, donors, industry partners, advocacy partners, governmental bodies, volunteers, the public and the media.
• Development coordinate, cultivate, solicit, and steward plans for donors; advance and manage a strategic annual and multi-year fundraising plan.

CANDIDATE PROFILE
The Board of Directors is seeking a creative visionary to inspire the Foundation's exceptional team and to lead the Foundation in reaching its full potential, ensuring efforts are strategically focused to accomplish the mission. The CEO will be the strongest possible advocate for advancing ALS research, care and support, recognizing that people living with ALS are the experts in their disease. The successful candidate will have a deep commitment to, and passion for, the mission. While being an expert in ALS is not required, a willingness to learn about the disease and being comfortable interacting with people and their families who are affected by ALS, exhibiting appropriate empathy, kindness and professionalism is required. With exceptional drive and passion, the selected candidate will have experience developing, articulating, operationalizing, and assessing priorities. Candidates must demonstrate success establishing relationships to strengthen program and service delivery.

The ability to partner with the Board and senior leadership to identify funders, strategically guide opportunities to engage and establish new relationships, and to build a robust pipeline that supports annual and long-term fundraising goals is needed. Proven ability to recognize and act on revenue generating opportunities that may be innovative or non-traditional would be highly valued. The successful candidate will have demonstrated accomplishments in fundraising, including securing major gifts or grants from individual donors, foundations, corporations and possibly government sources. The person we seek will be an innovative marketer who will continue to grow visibility for the Foundation. The candidate must possess excellent communication skills with the ability and presence to represent the Foundation internally and externally.

The ability to demonstrate clear, effective, sensitive and consistent leadership with good attention to detail is ...