Thank You All!

We had another successful Run4Rett on October 15th!  The weather was not picture perfect, but we brought our own sunshine!

Abby with her grandpas

 To my surprise, Abby walked the entire 1 km route!  She was coached by her grandpas and cheered on by many fans!  She was feeling good all day and enjoying all the attention!  It is by far her favourite day of the year!

Many of us ran the 5 km route.  There were some light, refreshing showers to start us off, but the big downpour held off until after the event.  It was great to see all the Team Abby shirts!  I was also encouraged along by all the young kids on Team Erika who never seemed to run out of energy!

There were a dozen different families representing girls and women with Rett syndrome.  The Run4Rett is a great way for us to show support for each other and to feel the support of family and friends.  I was happy to  connect with some families I hadn't seen since last year.  Representatives from the Ontario Rett Syndrome Association were on hand to provide resources and answer questions.  Dr. Eubanks (University Health Network) was there with his family and many students and staff from his research lab.  Thank you all for coming!

Thank you to everyone who came to offer support to Team Abby!  Every year, it is a slightly different mix.  Special mention to Trish for coming all the way from Vancouver and sponsoring our shirts again this year.  Thanks! 

Abby with caregiver, Emma

Thank you to everyone who came to volunteer!  Special mention to Tim and Cindy for the bulk of the organizing for the silent auction.  It runs so smoothly, most people don't realize how much work goes into it.  The auction raised about $3,400. 

Thank you to everyone who donated money in the form of pledges this year!  The event raised over $40,000!  Year after year, we are gratefully amazed by how many people are willing and able to pitch in.  Rest assured that your money is being put to good use.  The Ontario Rett Syndrome Association funds many programs which benefit Abby directly.  We appreciate your support!

Thank you!

Another New Season

Spring and summer were difficult for our family this year.  Abby's Uncle Mark and Grandma Liz each died.  Abby attended the ceremonies and cried tears of sadness.  She also joined with us in being comforted by the extra time spent with family and by the support of so many friends.

I am still not ready for September, but it has come and gone.  We're back to work and back to school.  All the fall busyness is in full swing and I'm still feeling like saying, "What a minute; I'm not quite ready."

In much the same way, after all these years, I feel like I'm not quite prepared yet to have a child with Rett syndrome. There is a lot to learn and adjust to and we are always learning.  There are often new symptoms, new life stages, new challenges, and new questions.  You are never ready.

Compared to last year, Abby has been relatively happy and free of new symptoms.  She's adjusted well to her new class and teacher at school.  She even took in the fall fair (albeit with headphones), with all its sights and sounds.  She loved seeing the farm animals and shouted with delight at the newborn baby pigs.  Just a few years ago, that would've been an impossible outing, due to sensory overload.

October is Rett Syndrome Awareness month.  I put together a short new video to show people who still don't know about it.  New families are still being hit with this diagnosis, fully unprepared as we were.  

The Ontario Rett Syndrome Association is here to help all new families.  They are planning a new conference for families and researchers in the spring.  They are advocating for people with Rett Syndrome through Neurological Health Charities Canada.  They are funding new research projects every year.  This year's grant helps one of the first clinical trials for Rett syndrome.  Also this year, Abby has directly benefited by being able to use the Rett Syndrome Clinic in London. 

All funds from the Run4Rett go to the Ontario Rett Syndrome Association.  This year's Run4Rett is just two weeks away.  If you still would like to register, you can do it online or in person.  You can also download a pledge form for collecting pledges. 

Team Abby shirts have been ordered.  This year's design is by Abby's sister, Caroline.  Special thanks to Park Royal Physiotherapy & Sports Injury clinic for sponsoring the shirts again this year!

When you get to the event on October 15th, you will find the pile of shirts inside the "barn" by the Silent Auction.  Just pick your size.  First come, first served.

We look forward to seeing those who can come!  We'll post photos for those who can't come!

Thank you to all of you who have participated this year or any year by walking, running, pledging, cheering, or donating!  Thanks also to all the generous people who donated to O.R.S.A. in memory of Mark or Liz.  Over $10,000 was raised through these memorial donations.  It is gratefully appreciated by all.

Time to Register

Registration is open for this year's Run4Rett.  All the details are on the Run4Rett web site.  

There are quick links at the right side of this site to register online or sponsor Team Abby.  The money all goes to the same place, no matter whom you sponsor.

Once again, we are welcoming any T-shirt sponsorship available.  We will need to get these ordered soon, so let us know if you can help out or if you have an idea.

Team Abby is delegated to the running the Silent Auction again this year.  If you'd like to volunteer, sign up online and indicate Silent Auction for all your choices.  If you have items to donate or ideas or leads for items, please let us know.

Check this site for updates in the next few weeks.  We look forward to seeing many of you on October 15th.