MDF chair Jeremy Kelly receives OBE from King Charles III

Myotonic Dystrophy Foundation volunteer Board Chair and Lifetime Trustee Jeremy Kelly has been appointed an Officer of the Order of the British Empire in the 2026 New Year Honours. The award recognizes more than two decades of leadership that helped expand research, advocacy and support for people living with myotonic dystrophy worldwide.

Why it matters: - The OBE recognizes more than 20 years of volunteer leadership in a rare disease community that is still working toward approved treatments and, ultimately, a cure. - The honor also highlights the role of patient-advocacy organizations in speeding research, building clinical partnerships and expanding support for families affected by myotonic dystrophy.

What happened: - The Myotonic Dystrophy Foundation said volunteer Board Chair and Lifetime Trustee Jeremy Kelly was appointed an Officer of the Order of the British Empire in the 2026 New Year Honours. - Kelly received the insignia from King Charles III during an investiture ceremony at Windsor Castle in June 2026. - The recognition marks more than two decades of service to the global myotonic dystrophy community through Kelly’s leadership of MDF.

The details: - The Order of the British Empire was established in 1917 and is one of the United Kingdom’s highest civilian honors. - OBE appointments recognize distinguished national or international achievement and service. - During Kelly’s tenure, MDF expanded patient care and advocacy, advanced research and helped build a global network linking researchers, clinicians, industry partners and families. - Kelly’s work has focused on accelerating treatment development and supporting efforts toward a cure for myotonic dystrophy. - In his remarks, Kelly said his family’s experience with the disease began in 2005, when his wife, Erica, and sons, Jack and Ben, were diagnosed. - Kelly said his late father urged him to take a broader view of how to change the landscape for myotonic dystrophy, and that guidance shaped his work with MDF. - Kelly said receiving the same honor held by his father was the greatest privilege of his life. - Kelly said the award is also a tribute to volunteers, donors, clinicians, researchers and staff who have supported MDF’s work. - Dr. Darren Monckton of the University of Glasgow said the field of myotonic dystrophy research has been transformed over the past two decades and credited Kelly with helping create the environment for that progress. - Dr. Monckton said Kelly’s stewardship strengthened the global research community and helped lay the foundation for treatments and a cure. - MDF Chief Executive Officer Tanya Stevenson said Kelly’s leadership helped shape MDF into the world’s leading organization dedicated exclusively to myotonic dystrophy. - Stevenson said MDF has grown through expanded patient support, scientific conferences, research initiatives and a therapeutic development pipeline. - MDF describes itself as the world’s leading nonprofit organization dedicated exclusively to improving the lives of people living with myotonic dystrophy and accelerating research toward treatments and a cure. - MDF says its work includes patient support, education, advocacy, scientific collaboration and research investment. - More information is available on MDF’s website.

Between the lines: - The award is a signal that myotonic dystrophy advocacy has moved from niche patient support toward a more mature, internationally connected research effort. - Kelly’s recognition also reflects the growing influence of volunteer-led foundations in rare disease drug development. - The repeated emphasis on collaboration suggests MDF sees progress as dependent on sustained coordination among patients, researchers, clinicians and industry.

What's next: - MDF is expected to keep pushing research, advocacy and support programs as the organization works toward treatments and a cure. - Kelly’s honor may help raise visibility for myotonic dystrophy and the broader effort to accelerate therapeutic development. - The foundation’s next phase appears centered on keeping its international research network aligned around patient impact.