Meet Our Team
With more than half of our staff and board being parents, grandparents, or caregivers of someone with Rett syndrome, we deeply understand the challenges of living every day with the disorder. Our team also includes the world’s leading scientists and medical experts on the cutting edge of Rett research and treatment development.
Staff & Leadership
Board of Directors
Scientific Advisory Board
The Scientific Advisory Board (SAB) guides our investment in Rett syndrome research. The members of this exceptional group come from diverse scientific backgrounds, each recognized as a leader in the Rett research field with a track record of success.
Qiang Chang, PhD
Professor of Medical Genetics and Neurology & Director of Waisman Center University of Wisconsin-Madison
James Ellis, PhD
Professor, Department of Molecular Genetics The University of Toronto Senior Scientist, Developmental and Stem Cell Biology The Hospital for Sick Children (SickKids)
Kyle Fink, PhD
Assistant Professor, Neurology and Regenerative Cures University of California, Davis
Rocco Gogliotti, PhD
Assistant Professor, Department of Molecular Pharmacology and Neuroscience Loyola University Chicago
Wendy Gold, PhD
Director of Academic Career Development (SoMS) The University of Sydney Head of Molecular Neurobiology Research Group Sydney Children’s Hospitals Network Adjunct Research Scientist The Children’s Medical Research Institute
Lucas Pozzo-Miller, PhD
Mall Family Endowed Professor for Genetic Autism Research, Department of Pediatrics and Human Development Michigan State University
Steve Moss, PhD
Professor of Neuroscience and Director of the AstraZeneca-Tufts Laboratory of Basic and Translational Neuroscience Tufts University
Sharad Verma, PhD
Special Assistant in the Developmental Therapeutics Program, National Cancer Institute (NCI) National Institutes of Health (NIH) Dr. Verma is serving in his personal capacity.
Zhaolan (Joe) Zhou, PhD
Professor, Department of Genetics and Neuroscience, Perelman School of Medicine University of Pennsylvania
Medical Advisory Board
The Medical Advisory Board (MAB) enhance our efforts to expand the Rett syndrome clinical network, ensure best-in-class care, and provide expert consultation across the U.S. and around the world. They collectively bring decades of patient and clinical expertise to IRSF, helping us better serve the Rett community.
Elizabeth Berry-Kravis, MD, PhD Chair
Professor of Pediatrics, Neurological Sciences, and Anatomy and Cell Biology
Director, RUSH Pediatric Neurosciences F.A.S.T. Center for Translational Research
Rush University Medical Center
Amitha Ananth, MD
Pediatric Neurologist and Geneticist and Director of the Rett Syndrome and Related Disorders Clinic Children's of Alabama
Dallas Armstrong, MD
Child Neurologist and Director, Rett & Related Disorders Clinic Children's Health Dallas and University of Texas Southwestern School of Medicine
Tim Benke, MD, PhD
Professor of Pediatrics, Neurology, Pharmacology and Otolaryngology University of Colorado School of Medicine Ponzio Family Chair in Pediatric Neurology Research and Director of Research, Neuroscience Institute Children’s Hospital Colorado
Tim Feyma, MD
Child Neurologist, Rett Syndrome and Movement Disorder Clinic Gillette Children’s Specialty Healthcare
Aleksandra Jacobs, MD, PhD
Professor of Neurology Albert Einstein College of Medicine Director of Center for Rett Syndrome Children’s Hospital at Montefiore
David Lieberman, MD, PhD
Child Neurologist and Director, Comprehensive Rett Syndrome Clinic Boston Children’s Hospital
Eric Marsh, MD, PhD
Child Neurologist Children’s Hospital of Philadelphia (CHOP) Clinical Director, Orphan Disease Center University of Pennsylvania
Jeffrey Neul, MD, PhD
Child Neurologist, Annette Schaffer Eskind Chair, and Director of the Vanderbilt Kennedy Center for Research on Human Development Vanderbilt University Medical Center
Robin Ryther, MD, PhD
Child Neurologist and Pediatric Epileptologist Washington University in St. Louis
Steven A. Skinner, MD
President and CEO Greenwood Genetic Center
Bernhard Suter, MD
Assistant Professor Baylor College of Medicine Director Blue Bird Rett Center
Join Our Team
IRSF is a virtual organization based in Cincinnati, Ohio, with employees across the United States. We are always on the lookout for great talent who share in our passion and mission! Here is a list of our current openings:
Chief Executive Officer Posted on 1/3/2025
The opportunity:
- Lead an international organization focused on the treatment and cure of a rare genetic disorder.
- Collaborate with a passionate Board and staff that have raised and invested over $58 million for research since 1990.
- Leverage the expertise of 21 Research Centers of Excellence throughout the country.
- Provide support and programming to help families find expert care and connect with other families that are on the same journey.
Position Overview:
The Board is looking for a mission-focused, strategic, and results-driven leader. The CEO will serve as the face of the organization with a diverse group of stakeholders and will oversee execution of the foundation’s strategic goals. The successful candidate will work together with the Board of Directors and a talented, passionate staff. While periodic visits to Cincinnati are anticipated, the CEO can work remotely and lead a team that is dispersed across the country.
What You’ll Be Doing:
Strategic Planning & Goal Setting
- Lead, alongside the Board, the development of the organization’s strategic plan.
- Establish goals and evaluation criteria for each key initiative.
- Report to the Board of Directors on all key goals and outcomes.
Staff Management & Development
- Recruit, manage, and develop all staff.
- Instill a human capital development culture within the organization by focusing on training, development, compensation, employee relations, performance evaluation, and recruiting.
- Lead the performance management process that measures and evaluates progress against goals.
- Bridge national and remote office operations and cultivate healthy collaboration among all staff
Fundraising
- Develop the annual fundraising plan in collaboration with the development team and the Board.
- Ensure the organization is meeting its metrics and overall revenue goals.
- Enhance relationships with key partners in the pharmaceutical industry and other potential investors.
- Travel to events and fundraising programs.
- Generate new fundraising opportunities that support annual growth and sustain core programs, including grants, foundation support, major gifts, and corporate sponsorships.
Communications & Advocacy
- Raise public awareness about Rett syndrome and the goals of IRSF.
- Represent IRSF programs and point of view to other organizations, agencies, foundations, and the public.
- Advocate for research funding at the state and federal levels.
- Maintain a working knowledge of significant developments and trends in the field.
Program Development & Management (Family Empowerment)
- Continue to develop innovative programs to support the needs of families.
- Increase key impact measurements.
- Ensure that all programmatic goals are achieved and within budget.
Finance, Technology, & Quality Improvement
- Develop and manage the operational budget.
- Ensure the Finance Committee of the Board is active and engaged.
- Work with the outside accountant to provide monthly financial reports, monthly cash reports, and monitor investments.
- Track and interpret data to measure progress and support fundraising efforts.
Board Development & Engagement
- Work with the Board Chair to identify prospective new board members for consideration by the Nominating Committee.
- Develop the Board committee structure and provide support to ensure committee meetings are productive.
- Develop strategies to keep the Board well informed and engaged.
THE KEY REQUIREMENTS:
- Personal and professional passion for working with families with children through adults with a rare disease.
- Experience being the face of an organization with other organizations, Congressional and agency representatives, employees, Board members, funders, and other key stakeholders.
- Solid educational background—undergraduate degree required, MBA or similar advanced degree desired.
- Fundraising success: ability to build and sustain meaningful and fruitful relationships with public and private funders and donors.
- Active involvement with a mission-driven organization as a Board member or management team member.
- Results driven with a track record of exceeding goals.
- High level of business acumen including successful P&L management.
- Strategic vision and experience leading a strategic planning process.
- An ability to effectively build organizational and staff capacity by developing a top-notch team and recruiting top talent.
- Some understanding of clinical research, drug development and scientific advancements would be a plus.
- Engaged management style that focuses on development, mentorship, and ongoing communication.
- Available to travel nationally once or twice a month plus access to Cincinnati, OH headquarters office for periodic visits.
THE PAYOFF:
- See your efforts have a direct impact on the lives of families every day.
- Work collaboratively with a passionate group of staff members, Board members, world-class researchers, and volunteers.
- Build on the momentum leading to treatments and a cure for Rett Syndrome while serving as a model for other rare neurological disorders.
Other:
The CEO does not need to be based in Cincinnati, OH, but travel to Cincinnati and other locations is required. The ability to lead a remote workforce is expected as the majority of the team is remote with only a few people in Cincinnati.
Join Our Team
IRSF is a virtual organization based in Cincinnati, Ohio, with employees across the United States. While there are no openings right now, we are always on the lookout for great talent who share in our passion and mission.
Give them the best opportunity for a better life.
Your investment funds trailblazing research toward Rett treatments and a cure, enables family empowerment, and helps raise awareness about this rare disorder that impacts nearly every aspect of life.