Thursday, October 16, 2008
First, Sarah just got a new walker last week.... really her first one, because the old one just gathered dust since she hated it so much. Well, she loves this one. It is called an "Up N Go" (www.easy-walking.com). You can see Sarah using it on her YouTube page. I highly recommend it to any of you looking to help your daughter learn to walk!
Today, after school, her aide told me that she let go of Sarah's walker for a brief moment to get a book, and Sarah "just took off!" She "ran" away across the room!
So this is her very first taste of freedom. Well, once about 4 years ago, she took 10 steps in a walker, but it just wasn't so deliberate --- today Sarah new exactly what she was doing and she was beside herself!
Along that theme..... you must watch an amazing video of another little girl. Her name is Teya. She does not have Rett, but she does work her tail off to learn to walk after many years of therapy using the Cuevas Medek technique. It is truly a beautiful video to watch. Grab the tissues and go to www.teyawalks.com or www.cuevasmedek.com/teya_mov.html.
Wednesday, October 1, 2008
It's October, folks! And that means Rett Syndrome Awareness Month. Let's make it more than “awareness” and take some action.
Don't know where to start? Here is your Rett family "to do" list for October. Not a Rett family? You can still help with #3 and #4!
FIVE THINGS TO DO NOW TO HELP YOUR DAUGHTER:
1. Sign up for the Rett Syndrome Research Trust (RSRT) newsletter. The "register" link is in the "Families" section at www.rsrt.org.
2. Join Girl Power 2 Cure with a Family Membership -- it is just $5/mo and you get cards with your daughter's photo plus a web page for accepting donations in her honor, plus more! www.girlpower2cure.org/membership
3. Get your school (and other local schools) to host a Dress Up 2 Cure Day on April 1st. www.dressup2cure.org
You have to approach them ASAP to get it on the calendar... see if a group at school or a girl scout troop will take it on as a service project. All the info, plus a step-by-step school guide is at: www.dressup2cure.org/schools.
* if anyone is looking for a part-time job, you can get paid to do this! www.girlpower2cure.org/recruiter
4. Get at least 10 people (including yourself) to Sponsor a Drug in your daughter's name ASAP -- www.rsrt.org/news/
RSRT has an incredible opportunity for families to make a direct impact on this crucial research project to test 3,000 FDA-approved drugs/compounds on the Rett mice. Imagine there might be an FDA-approved drug sitting on the shelf right now that could help our girls!
*** 3,000 donations of $168 each will fund this project in its entirety - let’s get it done.
5. Forward this list to all of your Rett family contacts --- and then get started!
Thank you for doing your part in finding a cure for our girls,
President and Founder