Last night 1p36 Deletion Support & Awareness kicked of our annual family conference. Over the weekend there will be speakers, breakout sessions and activities for attendee families. For those of us who couldn't make it, we can follow along with the speakers at 1p36dsa.org where recaps and videos will be posted.
Also, a new logo for the organization was unveiled. "The logo features the first chromosome from 1p36 Deletion Syndrome in the shape of two people. They stand side by side, hands raised together in solidarity, just like our 1p36 family stands together supporting each other. They are similar but not exactly alike just as individuals with 1p36 Deletion Syndrome share many characteristics but are still unique. The missing bands on each arm represent the missing genetic material that has brought us all together." Ken Shirtcliff, President of 1p36DSA, said.
A new video featuring many individuals affected by 1p36 Deletion Syndrome was produced for the conference. For those of us in the group it's so exciting to see our children grow up and make such great progress. You can see the video above. Whitney is at the 5:05 mark.
Thanks to everyone who has worked so hard to put together such a wonderful weekend for our families. We wish we were there with you but we're reading the recap information and learning so much.
1 comment:
Thanks for posting, Carter is at 4:37. I hope to read the information soon, it's been a crazy week.
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