Friday, May 13, 2011

Angleman's Syndrome Foundation Walk

I want to take a moment to post about something important to me and my family, and to share with you an experience I had last year, and am excited to have again this month. I got to walk in the Angelman Syndrome Foundation (ASF) Boston area fundraiser walk. According the ASF: "Angelman Syndrome (AS) is a neuro-genetic disorder that occurs in 1 in 15,000 live births. AS is often misdiagnosed as cerebral palsy or autism. Characteristics of AS include; developmental delay, lack of speech, seizures, and walking and balance disorders. Individuals with Angelman Syndrome will require life-long care."

My cousin Stacy, whose 3 children all have AS, flew into Boston with her family all the way from Washington State. They came in because for the past few years they have been participating in a study based out of Boston's Children's Hospital, and luckily both this year and last (which was actually the first year this walk existed in Boston) they were able to line up their trip with the date of the ASF walk.

This year will be the 2nd Annual Boston Walk, so I am excited to see if the turn out is even better than last year. You can read more about Stacy's family and the walk here at her ASF walk fundraising page.

Here is a glimpse at our experience last year:

We put on our cool ASF walkathon shirts. And made sure to close our eyes in every. single. picture.
We looked around and didn't see anyone else in the meeting area. Oops, we were late since we got all turned around on the way over! There was a volunteer there waiting for any late walkers though, and she set us on our way.
Despite being late for the walk, we were still a pretty happy bunch. There were smiles all around.

And off we went! The walk was held in a suburb north of Boston, so it was a quiet and easy area to walk around.
When we finished the walk we were tired but happy.
And we were greeted with applause and shouts of encouragement from the volunteers.
And we got to play and relax and eat some snacks with other walkers.
Olivia thought the best part of the day was at the end, when they no longer needed the ice in the coolers, and the event staff let her and her brother play with it.

Can't wait to go to this year's walk- it's only a week away!

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