Our New Executive Director
We are pleased to announce that, following an extensive search process led by our Board of Directors, Bob Robinson has been selected as Executive Director, effective July 7, 2025.
The Board received applications from candidates nationwide for this position. We conducted a rigorous and thorough process, holding multiple stages of interviews with numerous well-qualified candidates.
With significant consideration given to the skills, experience, and expertise needed to successfully guide the Smith-Magenis Syndrome Research Foundation in our next phase of growth, the Board has selected Bob Robinson to serve in this important leadership role. Bob has over 30 years of experience working in not-for-profits. His experience includes 18 years in the field of rare diseases, as the Executive Director of the Bleeding Disorders Alliance of Illinois, a statewide education and advocacy organization for individuals with inherited bleeding disorders. He specializes in strategic planning, financial development, and community engagement.
Bob’s expertise, leadership skills, and commitment to rare diseases make him an exceptional individual for the role of Executive Director. We are confident that under his leadership, the organization’s success and impact in achieving its mission and vision will flourish.
Please join us in welcoming Bob as Executive Director by making a donation, which will help us advance innovative scientific research that identifies treatments vitally needed for individuals with SMS and their families.
Thank you all for your continued support and partnership.
