Tuesday, December 20, 2011
Thursday, December 15, 2011
Kate can’t use her hands very well and that precludes her from using about 98% of the toys available on the market. As a result, gift-buying for children with Rett syndrome can be tricky. Last year, Kate’s grandparents came upon a brilliant gift idea you can’t get in a retail store. They bought her a Fathead online.
Fatheads are massive wall graphic decals of famous athletes and pop-culture characters. If you’ve got the wall real estate, the sky is the limit with Fatheads, including the almost 4’ tall Dora the Explorer, or whatever character your child happens to like. We had to send back the original Dora for the smaller Dora Fathead Jr. because the full-size Dora didn’t fit her wall and looked like it was going to eat the neighborhood.
They’re not inexpensive, but if some family members want to chip-in, it’s a unique gift idea. Kate goes over to hers and stares adoringly for a few minutes each day. Best of all, it makes the Lite-Brite she can’t use seem kind of lame.
Fathead can be found at www.fathead.com.
Wednesday, December 14, 2011
Tuesday, December 13, 2011
Sunday, December 11, 2011
Friday, December 9, 2011
With a few weeks to go before the September Gala date, we thought we’d have plenty of time to put together a short video to show that night. We thought it was essential to tell our family’s story and to explain Rett science in a way that wasn’t unnecessarily complex. We didn’t think some of the detail would work well within our speeches and we expected the video to be an important component of the program. Then the hurricane forecast took an ominous turn and we spent several days battening down the hatches of our home. Once the storm struck and we were out of power for the week, we thought we’d have to scrap the video concept.
That’s when we called our friend Jeff Bemiss, a filmmaker, about six days before the Gala. His wife was out of town on business, but he said, “I’ll get a babysitter for the kids and I’ll be there tomorrow all day.” In the following three days, he filmed, produced and edited a video which exceeded anything we had imagined.
Many Gala guests told us later the video was one of the highlights of the evening and helped them understand the challenges Kate faces as well as the real promise behind the science of reversing Rett syndrome.
Many thanks to Jeff and to filmmaker Jason Rem, who allowed us to use footage from his documentary ‘RETT’.
The video can be viewed on our website at www.katefoundation.org in the 2011 Gala pull-down menu.
Thursday, December 8, 2011
Does anyone remember the closing scene from the 1981 film “Raiders of the Lost Ark”? Inside a vast warehouse, a worker rolls a crate containing the ark down an endless aisle of gargantuan boxes. With the 2011 ornament fulfillment and distribution campaign operating in our home, that’s about what our kitchen looks like right now, minus the vastness. Thanks for all of your incoming orders!
|Honey, have you seen the stove?|
Thursday, December 1, 2011
Dear Friends, Family, Sponsors and Donors,
The Kate Foundation for Rett Syndrome Research is proud to announce the September 10, 2011 Kate Foundation Gala raised $150,000 in funding for the Rett Syndrome Research Trust.
We were overwhelmed by the generosity of our community, including friends, family, neighbors, corporate sponsors, local businesses and volunteers.
Hurricane Irene hit the Connecticut shoreline two weeks before the event. We were without power, phones or cell service for one of the two weeks leading up to the Gala, so we needed some extra support. We were humbled by the selflessness of friends and strangers who pitched in to help make the event such a success. Neighbors we had never met showed up on the morning of the Gala to set up tables because they’d heard we needed additional help.
After a week of shifting weather forecasts, over 420 guests arrived and enjoyed a magnificent evening of warm ocean breezes, fine dining and spectacular jazz music. A gallery of Gala photos is available for viewing on our website at www.katefoundation.org.
We are grateful to everyone who attended and participated, including those who could not attend but contributed generously. We believe the day will come when Kate and all other children with Rett syndrome will realize a reversal of their symptoms through the promising research your donations are supporting. When that day comes, you will have been a large part of this success and we are deeply grateful.
Jeff, Sarah and Kate Canavan
and the 2011 Kate Foundation Gala Committee