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
Tuesday, November 29, 2011
Sleeping soundly for girls with Rett syndrome can be elusive. Talk to any Rett family and many will tell you sleep quality comes in waves. You can have a good night, a good week, a good month even and then it can all far apart on you. Last month, Kate woke up at 3:15 am every night for a week. It wreaks havoc on her days and ours. It’s been better lately, but it leaves you wondering if tonight is the night the train comes off the slumber tracks.
When I ran across this 2-minute 43-second film, I couldn’t help but think of Kate sleeping. On those nights when her body is quiet and her brain free from the crackle of Rett syndrome, where does her imagination take her?
Tuesday, November 22, 2011
We are proud to announce the release of our 2011 Glass Ornament Set for Rett syndrome research fundraising! We appreciate all of the enquiries we’ve received this year from people who’ve bought the ornaments in the past and are interested in purchasing new designs. Thank you!
Four new styles are now available for purchase on our website:
Possible gift ideas: The ornaments have been extremely popular among parents and families who have given the ornaments to teachers, therapists, caregivers and doctors. They’re also sought after at grab bag events, office parties and as hostess gifts for holiday parties.
The ornaments are $35.00 each and shipping is FREE! Shipping begins Nov. 29. Thanks for your support!
Friday, November 4, 2011
Our plans for Halloween night fell apart pretty quickly. We tried to give Kate dinner before going out Trick-or-Treating, but she just put her head down on the table next to her half-eaten grilled cheese and virtually fell asleep. People often ask us how Kate communicates, and that’s one of the greatest examples there is.
As best we can, we like to expose Kate to all of the possibilities out there for typical kids. We get very frustrated for her when her body won’t let her do even simple things, and that includes being too tired to go out Trick-or-Treating in our neighborhood.
This is where Kate’s school comes in. Three nights earlier, we attended an event that made the collapse of our home-based Halloween Monday plans insignificant.
Kate goes to a local school for kids with special needs. All of the children at her school have some degree of disability and the range is dynamic, from mild autism to profound physical, neurological and motor challenges. A few years ago, the school started an annual Halloween event called Trunk-or-Treat.
The concept is what it sounds like – instead of hopping door-to-door in our neighborhood – the kids move car trunk to car trunk in the school’s parking lot. A tailgate really, but with Snickers and $100 Grand bars. Keep in mind these are not empty blackened car trunks, but dozens of trunks elaborately transformed into Halloween dioramas (constructed by some talented parents). Lighting, cobwebs, moving parts, smoke, goblins with blinking red eyes, the whole deal. It’s a huge boon for all of the kids, most who have difficulty getting around. Flat, paved parking lot asphalt never looked so good. No stairs, curbs, or driveways to navigate. One family whose son is in a positional wheelchair built an incredibly intricate Batmobile around his chair. He looked like a pretty proud Batman sitting in that cockpit.
And Kate was a very proud Cowgirl Sheriff. Forty degrees with the wind blowing and she couldn’t have cared less. She seemed to love dressing up and seeing her schoolmates and teachers outside of school hours. She giggled most of the night moving car-to-car and when we finally got her home, she was so over-excited she wouldn’t go to sleep. Fine with us.
|Cowgirl Sheriff doesn't put up with any antics.|
Wednesday, June 8, 2011
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!
Monday, June 6, 2011
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:
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.
Jeff, Sarah and Kate
Wednesday, May 11, 2011
Sunday, April 10, 2011
Tuesday, March 29, 2011
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|
Thursday, January 27, 2011
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|
Thursday, January 13, 2011
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.