2025 Year In Review – President’s Message

March 2026

Dear Friends and Supporters,

Fifteen years ago, the Smith-Magenis Syndrome Research Foundation was founded on the belief that families, clinicians, and researchers working together could move the science forward and improve the lives of individuals living with Smith-Magenis syndrome. For many of us, this mission is deeply personal, shaped by the daily realities of loving and supporting someone with SMS.

Over the years, that hope has turned into real progress. The SMSRF has built a strong foundation, supported meaningful research, and grown a community deeply committed to this mission. None of this would have been possible without the many board members, volunteers, and donors who have given their time, leadership, and dedication to the SMSRF since the beginning. We are deeply grateful to those who helped shape the organization in its early years and laid the groundwork for where we are today.

We are also thankful for the strength of our current Board of Directors. Over the past year, we have welcomed new members who bring fresh perspectives and valuable experience, alongside long-standing board members whose continued commitment helps guide the work of the SMSRF forward.

This year, we also expanded our Scientific Advisory Panel by welcoming a new member who brings a broad range of scientific and clinical expertise. The guidance of the entire Panel has strengthened our ability to carefully evaluate research proposals and focus our funding on projects with the greatest potential to make a meaningful difference.

Another important step forward in 2025 was welcoming Bob Robinson as our Executive Director. Bob has already had a positive impact on the organization, helping to strengthen operations and bring greater focus and direction to the long-term goals of the SMSRF. We are grateful for his leadership and partnership.

This year’s Board Strategic Retreat was also a meaningful milestone for the SMSRF. It gave us the opportunity to reflect on how far we have come and to create a clearer plan for the future. The shared vision and roadmap that emerged will guide our research priorities and organizational growth in the years ahead, and I look forward to sharing more about this with you in the near future.

None of this progress would be possible without the continued support of our community. Your generosity allows the SMSRF to fund innovative research and continue moving the field forward with both purpose and hope.

As we look ahead, we do so with clarity, momentum, and confidence in the work we are building together. With a strong foundation, committed leadership, a strengthened scientific advisory team, and an engaged community, the SMSRF is entering its next chapter, poised to drive meaningful advances and create lasting impact for individuals and families affected by Smith-Magenis syndrome.

Thank you for being part of this journey and for your continued support.

Jennifer Iannuzzi
Board of Directors President/Co-Founder