We have yet another chance to influence the course of Rett syndrome research! Paige Nues, Director of Family Empowerment, sent out an email…In part it says: As the result of meetings just held in Washington DC, many of our elected officials are thinking about Rett syndrome right now, and we need you, as their constituents, to please email a request for ACTION before Wednesday. Your voice matters!
WHO THEY ARE: Rep. Carter (TX) Rep. Ruppersberger (MD) Senator Murphy (CT) Senator Schatz (HI) Senator Mikulski (MD) Senator Gillibrand (NY) Senator Brown (OH) Senator Alexander (TN) Senator Murray (WA) WHY THEY ARE THINKING ABOUT RETT SYNDROME: We have requested to include funding in the Department of Defense’s 2015 budget for Rett syndrome. Our Chief Science Officer Steve Kaminsky, PhD, recently met with officials asking them to include Rett syndrome in the “Peer Reviewed Medical Research Program.”
Being included in this list would allow Rett researchers to compete for this federal funding. Rett syndrome represents a clinical model of synaptic disorder associated with brain injury, as seen in wounded warriors. Clinical trials in Rett syndrome could lead to new avenues to approach traumatic brain injury. Included in the announcement is a sample letter. To see the whole announcement and sample letter click here.
I want to add my voice of encouragement-please take this opportunity and run with it! Because there is no representative from Massachusetts, I chose to write to Senator Murray as she is on the Veteran Affairs Committee. .
Dear Senator Murray, I am writing to you as a veteran, former resident of Washington State and single mother of a child with Rett syndrome. My daughter, Katelin, who has Rett syndrome was 13 when we left Washington for Massachusetts because there were not adequate services for her there. I was very sad to leave. I left behind a great job and longtime friends and the only home my children had known. Rett syndrome steals so much. First it steals your child, takes away their language and communication, takes away their ability to use their hands and leaves instead seizures, and a myriad of neurological and physical medical issues. It makes parents, like me, choose between services and caregiving or a job. It steals some of our children in the dead of night; parents put healthy, happy children to bed and wake to find them gone. As you are aware, Chief Science Officer of IRSF, Steve Kaminsky, PhD, recently asked to include Rett syndrome in the “Peer Reviewed Medical Research Program.” As a USN veteran, whose best friend, CPO Theodore Moreland (Seal Team 2) died from a traumatic brain injury in a training accident, and as a parent of a Rett syndrome child, I beseech you to approve this request. Research, such as Intrepid 2566 and the NNZ-2566 Rett syndrome trial held in Houston, TX which my daughter participated in, form a symbiotic relationship, providing vital data that will aid in the discovery of mutual therapies in both of these synaptic dysfunction disorders. Being a veteran is my honor, knowing that the military and country I so gladly served may possibly hold the key to finding a cure for my child through TBI research and vice versa-that finding therapies for Rett syndrome will help my wounded fellow veterans, seems like providence. In addition, such research may have repercussions in multiple neurological disorders, giving hope to millions. Behind every person that is cured or whose health is significantly improved there is a family- parents who would be able to work, siblings who won’t see being guardians and caregivers in their futures, but most of all the contributions these people, Rett syndrome and TBI suffers, were supposed to give to society will become a reality, instead of just one more thing stolen, stolen from everyone. Respectfully, Melinda Lancaster