The titin community understands that rare disease affects more than an individual. It touches families, sometimes across generations, and can shape lives in profound ways. This summer, our community experienced the loss of Douglas “Doug” Huss, a beloved husband, father, grandfather, family member, and friend who lived with Hereditary Myopathy with Early Respiratory Failure (HMERF).
Doug died on July 17, 2026, at the age of 79. His obituary describes a true Renaissance man who approached life with curiosity, warmth, humor, and an open heart. Above all, he treasured his roles as husband, father, and grandfather, and had a gift for making the people around him feel seen and valued.
When Doug died, his family invited friends and loved ones to make memorial donations to Team Titin in his honor. More than $2,300 was given by family, friends, and members of his community. We are deeply grateful for their generosity and for the trust placed in Team Titin to carry that generosity forward.
Turning remembrance into research
Because Doug lived with HMERF, Team Titin’s Board felt there could be no more meaningful connection between these memorial gifts and our mission than supporting research focused on the condition that affected him and continues to affect members of his family.
Team Titin is honored to direct $2,319.20 in memorial funding in Doug’s memory to support the ongoing HMERF research of Jennifer Roggenbuck, MS, CGC, at The Ohio State University.
Jennifer is a genetic counselor and researcher studying autosomal dominant titinopathies. Her work seeks to better understand why certain disease-causing changes in the TTN gene lead to muscle and heart disease and how these conditions develop. Her research includes a specific focus on HMERF, with the goal of improving our understanding of the mechanisms underlying this rare disease.
For families living with HMERF, this work matters. Better understanding of the disease may help improve diagnosis and monitoring, help explain symptoms that historically have not always been fully recognized, and lay important groundwork for future care strategies and treatments.
Hope for the generations that follow
Autosomal dominant titinopathies can affect multiple generations within the same family. For Doug’s family, HMERF is not only part of his story. Other members of his family, including descendants, continue to live with this rare condition.
That reality makes research deeply personal.
We cannot undo the losses caused by titin-related disease. But through research, we can work toward a future in which families have more answers, better care, and ultimately better treatments. Supporting this work is one way that the love and generosity shown in Doug’s memory can create hope for those living with HMERF today and for the generations that follow.
This is at the heart of Team Titin’s mission. Research is not separate from the families we serve. It begins with their experiences, their unanswered questions, their participation, and their hope for something better. Our role is to bring families, clinicians, and researchers together and help move that hope toward progress.
We are profoundly grateful to Doug’s family and friends whose memorial gifts made this research support possible. We are equally grateful to Jennifer Roggenbuck and her collaborators for their continued commitment to understanding HMERF and other titin-related conditions.
Doug’s obituary says that Team Titin represents hope for individuals and families affected by titin-related conditions. We take that responsibility seriously.
We are honored to remember Doug through our continued work to strengthen the titin community and improve the lives of those affected by titin-related conditions. May the generosity given in his memory help move HMERF research forward and bring greater hope to the families and future generations who continue this journey.