Dear Fellow Families,
The events of the past several months have magnified how small our world is, how interconnected we all are, and how pivotal science is to our health and daily lives. I hope that each of you reading this, and your loved ones, are in good health and staying safe at home.
Living through this crisis is difficult for everyone but especially challenging for those of us with a child with special needs. For many of us the support systems we have in place that make life manageable are gone - critical therapies put on hold; school or day programs cancelled; caregivers paused. We are all struggling to make these long days enjoyable and stimulating for our kids. And we are trying hard not to let the “what if” questions creep into our consciousness.
The research field, like the rest of the world, has been hit hard with academic labs and companies shutting down or pausing activities. The pandemic will inevitably cause some delays to our programs. Ironically however, history teaches us that periods of crisis bring opportunities and innovation. In this spirit, my colleagues and I are evaluating our existing portfolio of research programs as well as proposals currently in our pipeline and prioritizing areas of highest impact. We are seeking to simplify, streamline and innovate.
Our commitment to our mission and to you and your child is neither diminished nor distracted, but in fact, redoubled. We are drawing inspiration from the medical staff on the frontline of this battle, from the sick and dying and from their grieving families. And we are drawing strength from you, our fellow families, who are putting their child’s health above all else, no matter how difficult.
Please stay strong, stay safe and most of all, stay healthy.
Executive Director, Rett Syndrome Research Trust