I was very happy to be contacted by Amy Anthony at the Cape Cod Times after I wrote a Letter to the Editor to thank the local community for their support of Katelin; but she didn’t want to print that…..she wanted to do a story!
To be honest I was a bit nervous, I didn’t want to say anything to jeopardize the study in any way, but I decided to go with it-what a great opportunity to spread Rett Syndrome Awareness. We did a couple of over the phone interviews then met up at the Centerville Library, which has always supported and encouraged Katelin and myself, plus the librarians gave her Fox, for pictures. Our story got bumped by the storm, but this past Sunday it ran. I think it came out great and I love the pictures they took. 🙂
In more good news- Colleen English, founder of Rettland.org, has told me they’re going live on March 2! Rettland.org is a non-profit organization whose purpose is to help families get to clinical trials. By covering the cost of two nights at a hotel when families go down to the baseline screening (right now just the NNZ trial, but they hope to expand), Rettland.org will make it possible for more families to participate, shortening the time it takes to fulfill FDA requirements. THANK YOU COLLEEN!!
And on that note-In an effort to support this worthy organization, I have contacted Stop & Shop to see if we can set up a Recycle for Rett Day. My hope is that people will donate cans and plastic bottles, then on a certain day IN THE SPRING after the stupid snow is done,(had to throw that in there!) we’ll turn them in. I’m also checking to see if a placard can go up that asks people to donate their slips that day. The person I talked to was very interested and I am meeting with them today! So, save your cans and bottles, people! My hope would be that this could happen in other cities on the same day. What fun that would be. Stay tuned for more details on this.
And one more VERY IMPORTANT note-
A message went out about a study being conducted by Dr. Nuell at Baylor, Texas Children’s Hospital. Katelin and I met Dr. Nuell when we were in Texas, what a super nice guy.
From Monica Coenraads:
|On the hunt for modifiers – Monica Coenraads & Dr. Neul discuss a newly funded project