Mar-co... Po-lo...

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?

Thank You!

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.

Sincerely,

Jeff, Sarah and Kate Canavan
and the 2011 Kate Foundation Gala Committee

Sleep

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?

 

2011 Ornaments Released!

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:

www.katefoundation.org/buy_2011_ornaments.html

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!

Trunk-Or-Treat

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.

 

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