Front Page!

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!

Picture taken by Cape Cod Times photographer, Christine Hochkeppel http://www.capecodonline.com/apps/pbcs.dll/article?AID=/20140223/NEWS/402230337/0/SEARCH

Picture taken by Cape Cod Times photographer, Christine Hochkeppel http://www.capecodonline.com/apps/pbcs.dll/article?AID=/20140223/NEWS/402230337/0/SEARCH

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.

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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:

Rett community, we need your help on this one so please read all the way through. As many of you know one of the approaches to defeating Rett that RSRT is pursuing is the identification of modifier genes that dampen the ill effects of having an MECP2 mutation- think of it as two wrongs making a right. We have been funding Monica Justice who is hunting for modifiers in mice. Her first modifier was published this summer. Today we announce a new project that comes at the same issue from a different angle. RSRT has committed $314,000 for a project that will be undertaken by Dr. Jeff Neul. He will sequence the exomes of high-functioning children and adults with MECP2 mutations and compare to exomes of kids on the severe end of the spectrum. We hope that this project will uncover modifiers which can then become drug targets. Please watch the video below. If you think your child fits the high-functioning phenotype being described please get in touch with Monica via FB or monica@rsrt.org The more kids we identify who fit the criteria the greater the chances of finding a modifier. Please share with your Rett network.
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One Response to Front Page!

  1. Linda E. Williams says:

    God bless you! Your sadness is paving the way for a brighter tomorrow for many. So missed you at last night’s meeting. Just three; we discussed marketing tools and headed home at 7:30. Hoping to see you soon. Love and hugs, Linda W

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