Water Water Everywhere

A recent trip to Florida reminded us how much Kate loves to be in the water.  Swimming appears to be a universally loved trait among girls with Rett syndrome.  The reasons are probably self-evident.  The sensory input of water pushing against muscles and skin and the weightlessness must be soothing to tired bodies.  Lately Kate’s walking has been excellent but it still requires her to work extremely hard.  When she’s immersed in the pool, she kicks and splashes like a suit of armor has been peeled off her back.

She gets aqua therapy periodically at her school and we’re doing regular sessions at a local indoor pool.

Kate has become pretty picky about water temperature.  Anything below 86 degrees Fahrenheit is unacceptable, prompting general aquatic discontent and animated yelling.  We’ve gotten her a wetsuit, which has helped.  If we can get the local indoor pool facility to crank up the water temp to 92 degrees, they’d have to teach us how to turn out the building lights.



Kate and Dad

Rett Syndrome on ABC's "The View" Fri. Jan. 28

In October of last year, we attended the Rett Syndrome Research Trust Gala Benefit in New York City.  We met several great Rett families that night including Manny and Stefanie Gutierrez whose two and a half year-old daughter Anna has Rett Syndrome.

Manny is a cameraman for the ABC talk show “The View” and he and his family will be profiled and interviewed this coming Friday morning (Jan. 28) on the show.   The program will air at 11:00 AM EST and 10:00 AM CST/Pacific and a segment focuses on their family’s journey with Rett syndrome.  They are joined on the program by Monica Coenraads, Executive Director of the Rett Syndrome Research Trust.

Despite being one of the few neurological disorders with a known genetic cause and one of the fewer that has been reversed in a mouse model, Rett syndrome gets very little media attention.  Many thanks to Manny, Stefanie, Gabriel and Anna for working so hard to draw much-needed attention to the disorder and the exciting science behind reversing it.

For more information about the taping and some great behind-the-scenes snapshots, visit Stefanie’s superb blog at “This Stefanie Matters” at this link:  http://thisstefaniematters.blogspot.com/

Manny, Stefanie and Anna on the set

Gabriel, Stefanie, Anna and Manny

Thank You, Tenacre!

Kate’s cousin Tim Lapsley is in sixth grade at the Tenacre Country Day School in Wellesley, Massachusetts.  He is also a student council member.  Each semester, the council nominates six charitable organizations to be the potential recipient of its school-based fundraising activities for that semester.  Presentations are made by each of the student nominators and then council members vote for the organization of their choice.  In November, Tim nominated the Kate Foundation and made a presentation about Kate and the Kate Foundation’s goal to help reverse Rett syndrome.  After hearing summaries of the other nominated charities, the decision was put to a vote.  We were thrilled to hear from Tim later that day the Kate Foundation had won the student council’s vote!  Thank you Tenacre Student Council and thank you Tim!

To raise money, Tenacre students, teachers and parents held a bake sale and a casual dress day they've dubbed “Grub Day”.  (The privilege of dressing like a grub cost students a dollar, so a special thanks to all of the grubs out there.)  While we were sitting around the kitchen table wiping out a tray of Christmas cookies over the holidays, Tim announced the Tenacre events had raised $325 for the Kate Foundation and Rett syndrome research!  Kate was there and she smiled widely.  We know she thinks it’s pretty cool her big cousin Tim is out there making presentations and raising money for Rett syndrome research. 

We’re proud of Tim for nominating us and grateful to him for addressing the main goals of the Kate Foundation:  raising awareness of Rett syndrome and raising money for the promising research behind reversing the disorder.

Thanks again to Tim and all at Tenacre!


Kate and cousin Tim



All Ornaments, All the Time

The ornament campaign is in full swing, as illustrated by this photo taken yesterday of a portion of the ornament boxes prepped for shipping.  These represent part of just yesterday's shipment!  Thanks to so much generous support, our local post office cringes when the Kate Foundation SUV pulls into the parking lot.

The 2010 Ornaments are Here!

The Kate Foundation for Rett Syndrome Research is proud to announce the release of our new 2010 glass ornament set for Rett Syndrome research fundraising. These stunning designs can be hung on a tree, placed in a stand or displayed inside a bowl or lit display. Hand-blown at Glass Eye Studio in downtown Seattle, each ornament contains volcanic ash from the 1980 eruption of Washington State's Mount St. Helens.

The ornaments are available for purchase on our website: http://www.katefoundation.org/

Rett Kaleidoscope

 

Rett Pomegranate




Rett Winter Sky




Rett Shimmer