The fund is established thanks to an inaugural gift from the Otis Family in honor of their son, Barrett.
The Rett syndrome research landscape has never been more exciting. New clinical trials are underway in gene therapy, and we eagerly await the FDA’s decision about Trofinetide. But we know that families of males with Rett syndrome often feel unrepresented and unsure about what research will benefit their sons. And time is of the essence.
REPRESENTING MALES WITH RETT
In 2019, Alan Shukovsky, dad to Grayson, joined IRSF’s board of directors to continue to enhance the Foundation’s impact on the entire Rett syndrome community, including males. His guidance over the past four years has been instrumental and has strengthened IRSF’s commitment to serving ALL those living with Rett syndrome – including males.
It was initially incorrectly believed that males could not have Rett syndrome. But we now know that is not true; males do have Rett and many more than originally believed. That’s why part of the research that IRSF funds aims to better understand the actual number of males who have Rett syndrome.
INVESTING IN RETT SYNDROME RESEARCH FOR MALES
Still, we felt compelled to do more. It is important to note that other than research focused on activating the silent X chromosome, which males do not have, there is no reason to believe that other treatments will not work for men and boys with Rett syndrome. That’s why we’re making strategic investments in research to benefit males. Just last month, IRSF awarded Dr. Tim Benke our first grant focused exclusively on research for males. A grant made possible by our newly designated fund: The Barrett Otis Research Fund for Males with Rett.
THE BARRETT OTIS RESEARCH FUND FOR MALES WITH RETT
Rick and Alyssa Otis establish this fund in honor of their two-year-old son, Barrett. Like many boys with Rett, his battle has been intense from day one.
“Barrett, like many other males who suffer from Rett Syndrome, has battled symptoms since just a few days after birth,” they shared. “When Barrett was diagnosed with Rett Syndrome at age 1, we vigorously researched everything we could on the topic. We were horrified to discover the amount of misinformation regarding males with Rett Syndrome, particularly information that incorrectly characterizes males as rarely surviving past infancy.”
For guidance, the Otis’ turned to Rett syndrome experts, including Dr. Bernhard Suter. Medical director of the Blue Bird Circle Rett Center at Baylor, an IRSF-designated Center of Excellence for best-in-class clinical care, Dr. Suter has gained international recognition for his expertise in treating male patients with Rett just like Barrett.
“For males with Rett (MECP2), research initiatives like this, provided by a foundation that cares about these conditions, are direly needed. Males with Rett are so often overlooked in the search for a cure, yet their community is steadily and rapidly growing,” said Dr. Suter. “The Barrett Otis Research Fund will undoubtedly stimulate research driving our understanding of this severe neurodevelopmental disorder forward on the way to clinical trials.”
Thanks to their work with Dr. Suter and close connection to IRSF, the Otis’s have never felt alone on Barrett’s Rett journey and are committed to working with other families to make research focused on males a reality. They are proud to establish this fund with an inaugural gift.
“Our hope is that this research fund will honor all males who have suffered from Rett Syndrome in the past, advance research to accurately describe the current male community, and help to create a brighter future for all males who suffer from Rett Syndrome in the years to come.”
– Rick & Alyssa Otis
DONATE DIRECTLY TO THE BARRETT OTIS RESEARCH FUND
We are grateful to all the families of boys and men battling Rett syndrome who have not given up, who share their concerns, fears, and questions with us, and who continue to ask, “What about males?” We also know that many families have lost their sons too soon; know your fight has not been in vain. We hear you, and we will not stop until everyone with Rett syndrome – including males – has accessible treatments and a cure. We will not stop until we create a world without Rett syndrome.