Tuesday, May 15, 2012

Unexpected Travels


On Friday afternoon, Kate came home from school teetering at the edge of sleepiness. School can make her tired. A ride in the car can help expedite the napping process, so we headed out. We ended up circling the town green of the next town over, Guilford. If ever there was a textbook New England Town Green, here ye shall find it. Churches with steeples, general store, hardware store and big shading oak trees.

Twenty minutes in the car and her sleepiness morphed into wide-eyed wakefulness, so we got out of the car at the Green. Sky blue, strong breeze. And Kate wanted to walk. She’s been very tentative lately walking on her own -- she likes to be near enough to something to hold onto if she falls. But stand outside with her, put out your hand out and she often wants to go. And we did. All the way across the Guilford Green.

It took a very long time and we took a lot of breaks. Between breath-holds and Kate just wanting to look around, we stopped. A lot. About a quarter of the way across, I said, “Kate, I think we should go all the way to the other side.” Her face can be very expressive, but she didn’t react much. She didn’t protest either, which she knows how to do. On we went. People scattered about the green resting in the tree shade took notice. On the occasions we are stared at in public, it’s usually for all the wrong reasons. But not today. A five-year-old little girl to whom walking is clearly an effort, taking 6-8 steps at a time, resting a couple of minutes between surges, cracking tiny smiles in between. She made it all the way across the long end of the Green, legs buckling a little by the end.

Monday, April 16, 2012

Plus or Minus



Easter Sunday was a horrible Rett syndrome day and it trickled into some surrounding days. Kate hadn’t slept well that Saturday night and she seemed overwhelmed by the activity surrounding our Easter plans. Her breathing was poor, she barely ate anything and she spent much of the day being upset.

She’s been better this week. Her school has since sent home this snapshot, taken the week before Easter, showing her at ease and enjoying Egg Hunt festivities at school.

Celebrating holidays and important events on their actual calendar days can have an elusive success rate with Rett syndrome. Plus or minus a few days, we’ve learned, really opens up the possibilities. The picture was not taken on Easter, but it was taken on Kate’s Easter.

Tuesday, March 27, 2012

Kipnis Lab Interview


Kipnis Lab Interview from RSRT on Vimeo.

3D Computer Animation of Kipnis Nature Paper


Animation of Kipnis Nature paper from RSRT on Vimeo.

Your Money at Work



Dear Friend of the Kate Foundation:

This week, Jonathan Kipnis, Ph.D. and colleagues at the University of Virginia published a paper in Nature, a premier peer-reviewed science journal, demonstrating that severe symptoms of Rett syndrome in mice were arrested when faulty immune cells in the brain—called microglia—were replaced with healthy cells via bone marrow transplant.

Your generous donations to the Kate Foundation helped fund this research through our relationship with the Rett Syndrome Research Trust (RSRT).  Your contributions have made a direct impact on the science and have opened a potential new avenue for understanding Rett syndrome and developing possible treatments.  This is your money at work!

Bone marrow transplantation is a serious medical procedure, and the prospect of applying the mouse model results to humans is being approached with appropriate caution.  Further testing, replication of the results, and additional investigation is required to explore the possibilities.  Potential drug-based therapies which might boost microglia function are also being considered.

Kate will soon be five years old, and we are excited about the promise this research holds and the opportunities it may present.  We deeply thank you for supporting the Kate Foundation and our goal to help Kate and all children and adults with Rett syndrome live a more independent life.

Thank you again for your generosity and support.

Sincerely,
Jeff and Sarah Canavan

Kate Foundation for Rett Syndrome Research
944 Main Street | Suite 202
Branford, Connecticut 06405

Tuesday, December 20, 2011

Over $10,000 - Thank You!

Our first order for 2011 ornaments came in on Nov. 21 from Pacific Palisades, CA and our last order came in yesterday from Lake Clear, NY. This year’s holiday campaign sold between 500-600 ornaments and will yield over $10,000 for Rett research funding. After the holidays, we will take a closer look at the tally and announce a more accurate number. A quick review of our logs shows we processed orders from 32 States, Washington D.C., the UK and Canada. We received more orders from Canada this year than ever before (thank you, Alberta and Ontario!) Many thanks to our friends Amy, Chris, Claire, and Mark for giving up a Sunday to build hundreds of ornament and shipping boxes. Most of all, thank you to everyone for ordering and for sending so many ornaments as gifts. Your generosity is helping to reverse Rett syndrome. Thanks!