Saturday, October 21, 2017

Run4Rett 2017

Thanks to everyone who came out to support Team Abby at the Run4Rett last month! We had a fabulous day with the warmest, sunniest weather ever. Abby had been feeling rotten the day before and didn't sleep well, so it was touch and go to start the day. As soon as she saw the crowds arriving, she lit up with excitement and she ended up really enjoying the day.

As always, there were new families joining us and I enjoyed connecting with parents from across Ontario. I was also excited to welcome scientists from three different research institutes in Toronto who are all investigating Rett syndrome. It is magic to see the scientists and families connecting.

What I love about the Run4Rett is that it combines real-life support (there's nothing like cheering crowds to energize you) with much-needed fund-raising. It's also a really fun day to get some exercise and hang out with family and friends.

To everyone who sponsored us for the first time and to all those who support us year after year after year with your donations and your prayers and your words of encouragement, thank you from the bottom of our hearts. You are making positive change in the lives of individuals with Rett syndrome, including Abby.



Saturday, August 12, 2017

Summer 2017

We are looking forward to this year's Run4Rett on Sunday, September 17th in Richmond Hill!

Helpful links:

Bring your own Team Abby shirt if you have one! Any colour. We have tons of extras, too.

Abby, Caroline, Ben
Abby's having a very good summer, enjoying outings around town, shopping and swimming (pool therapy). She continues to have cycles of difficult days with lots of discomfort, but it hasn't been as serious as it was during the winter months. She almost always sleeps at night now. We've worked with a doctor to gradually eliminate all medications since they weren't really helping anything any more. Recently, Abby really enjoyed some cottage time with extended family. She had a good end to the school year and really enjoyed being able to dress up and celebrate prom with friends. 

We're very excited to now being enjoying the use of a big and beautiful shaded accessible front porch! Thanks to an anonymous private donor, we did not need to use Easter Seals funding and were able to design it to our liking. We've already spent much more time outside with Abby due to the convenience of easy movement.
Abby trying out the new ramp!

In April, Abby was featured in the Krembil Research Institute magazine which went out to some districts in the Globe and Mail. The feature was about Rett syndrome research in the Eubanks lab in Toronto. This week, I took Abby to visit the lab and she was very excited, as always. I asked her to think about questions she'd like to ask when we were there and she did not let me down:

see. Dr Eubanks. research.
like. go. What's new?
why? why? Rett syndrome.
What's new? How are you?
like. do. see. lab.
(punctuation donates separate button selections by eye gaze)

There is still much hopefully news in the research world. Most notably, scientists are beginning to understand more and more about how the MeCP2 protein is supposed to function. (A MECP2 gene mutation causes Rett syndrome.) The research grants awarded by the Ontario Rett Syndrome Association (thanks to fund-raising dollars) have resulted in valuable information to further learning. This year's research grant is being awarded to Dr. David Grynspan in Ottawa for his work on studying treatment for GI dysfunction in Rett syndrome.

We appreciate your continued support for Team Abby and the Ontario Rett Syndrome Association! Hopefully, we'll see some of you on September 17th.