Thank You Pfizer and Mystic Aquarium!

Last night, we took Kate to a special event at the Mystic Aquarium in Mystic, CT.  In conjunction with the Autism Laboratory in Pfizer’s Neuroscience Research Unit, the Mystic Aquarium hosted a free and private two-hour open house for families with children on the spectrum and/or other special needs.  To start the event off, they had a great amphitheater show featuring sea lions which Kate seemed to like a lot.  (There may have been other animals featured, but we were 15 minutes late, sorry to say.)  Then families were afforded free reign to visit all of the exhibits and interactive displays on the grounds.  Kate liked walking inside the exhibit space and standing at the edges of the glowing glass boxes.  It’s unclear if she had a favorite fish, but she did seem to pay extra attention to the orange baby clownfish, better known by all parents everywhere as the Nemo fish.  It was a nice atmosphere to be in, even for a short time, where no one stared and wondered.  Thanks again Pfizer and Mystic Aquarium!

2011 Kate Foundation Gala

On Saturday, September 10, 2011, the Kate Foundation will hold its first fundraising Gala to benefit Rett syndrome research.  The event will be held in Branford, Connecticut on the lawn at One Selden Avenue overlooking Long Island Sound.  Beginning at 5:00 PM, guests will enjoy panoramic ocean views of the Thimble Islands as well as live music, cocktails and a selection of silent auction items.  Dinner begins under the tent at 7:00 PM and includes a short program and live auction.

To read more about the Gala and to purchase tickets, sponsorships and program book ads, please visit the Kate Foundation website by clicking on the link below:

www.katefoundation.org/gala.html

We invite you to share this link with friends and family who might be interested in joining us.  We expect it to be a spectacular event and look forward to seeing you.

Sincerely,

Jeff, Sarah and Kate

Big Fish

A friend recently had this restaurant-sized Goldfish monolith delivered to Kate.  The raised eyebrows suggest a plotting of strategies to keep them away from Dad.

Trip to the Garden Center

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