Good morning, Chairwoman Gonzales, Vice Chair Huffman, Ranking Member Antonio and members of the Health and Aging Committee.My name is Shannon Starkey-Taylor and I am the Chief Operating Officer of Rettsyndrome.org. I am pleased to be here today as a proponent of SB 117. I want to thank Senator Yuko and Senator Hughes for their support of this bill.
Every single day most of us in this room take for granted walking, talking and eating on our own. Those with Rett syndrome don't have that luxury and yet most people don't have a clue about the disorder that affects about 1 in 10,000 girls. This means that a girl is born with Rett syndrome, a life-threatening disorder, every 2 hours.
Although born with the syndrome most girls are not diagnosed until between the ages of 6 and 18 months. Prior to onset, these young girls develop normally but then suddenly their development regresses. This was the case for thirteen-year-old Hannah who was able to say words like "momma", "ball" and "Barney". Hannah's mom Jennifer describes that at "18 months Hannah was no longer saying the few words she had learned. We thought she couldn't hear because she wouldn't turn around when we banged pots and pans. We went to the pediatrician who referred us to the Children's Developmental Delay Department for testing. Rett syndrome only came up once in the conversation but we skipped over it because Hannah did not fit the disorder exactly because she didn't ring her hands like a typical Rett girl. Finally, a few months later, we went to a Genetic Doctor who diagnosed Hannah as having Rett syndrome."
Girls with Rett syndrome have a wide range of symptoms that include, the loss of speech, the ability to walk and purposeful use of hands. Other symptoms include seizures, breathing irregularities and extreme anxiety. The hallmark sign of Rett syndrome is near constant repetitive hand movements. Although they can’t talk, they understand far more than they can communicate to us, evidenced by their bright and attentive eyes, and ability to express moods and emotions.
The International Rett Syndrome Foundation doing work as Rettsyndrome.org is the most comprehensive nonprofit organization dedicated to accelerating research of treatments and a cure for Rett syndrome. Since 1998, we have invested more than $35 million in Rett syndrome research with the goal of accelerating discoveries of treatments for Rett syndrome through clinical testing, with the hope of improving the lives of those diagnosed. We work to fund high-quality, peer reviewed research grants and programs. In 2014 we were able to fund 39 active research and grant projects. We are leading the revolution in Rett syndrome research.
Just 15 years ago, there wasn't even a known cause of Rett syndrome. But in the past 10 years, we have funded research of several compounds that reversed Rett syndrome in mice, As a result of that research, we are now sponsoring a Phase II clinical trial of an Insulin-like Growth Factor known as IGF-1.
The research we do at Rettsyndrome.org helps parents of girls with Rett syndrome have faith that one day their daughter's symptoms will be treated. Bill Babiarz whose six-year-old daughter Cammy has Rett syndrome explains, "We are able to stay positive because of the amazing research being done right now. We have complete faith in Rettsyndrome.org and its Chief Science Officer. This faith makes it much easier to keep on fighting."
A second component of our mission is to empower families with knowledge and connectivity. We work with families internationally but are housed right here in Ohio because our Founder is from Cincinnati. We are the one stop resource for families on all things Rett. Families come to us for the full spectrum of information on Rett syndrome. We look to connect families with others so they know that they are not alone in this journey.
Today, we stand collectively in collaboration with Girl Power 2 Cure to make October Rett syndrome Awareness Month. Having a dedicated month for Rett syndrome awareness would ensure that families that are getting the diagnosis for the first time know where to turn for help. It would put our organization in the forefront of their minds so they know they could turn to us for support, information and guidance. They could connect with other families that are in our network to gain the support they need no matter what phase of the journey they are on.
With awareness comes greater action. Once more people know about Rett syndrome the more they will want to do something to help. They will become advocates for the cause and get involved as volunteers, donors and supporters.
Finally, with our aggressive research strategy, more awareness would lead to additional funding so we can one day find a cure! Putting on clinical trials is not cheap. The trials cost a lot of money and require many resources including people and time. The more research we can conduct the more likely we will find treatments and a cure for Rett syndrome!
Our girls cannot speak for themselves and unlike many other organizations we do not have a celebrity to help promote the cause. This is why it is so imperative to have Ohio declare October as Rett syndrome Awareness Month so we can be the voice for so many who are voiceless.
Good morning, Chairwoman Gonzalesand members of the Committee, I appreciate your attention and consideration of this important issue. I would be happy to answer any questions the committee may have.