Tuesday, September 22, 2015

Embracing and Celebrating Our Differences

Sculpture By: Roy Lichtenstein: Brush Strokes in Flight
This past weekend, I went to Columbus, Ohio and delivered one of two keynote addresses at a medical conference at the 22Q Center at Nationwide Children's Hospital.

If you are reading this blog post and don't know what 22Q11.2 Deletion Syndrome is, keep reading, because you could have this syndrome and NOT even know it. For twenty-four years, I didn't know I had this syndrome; the only diagnosis I had was congenital heart disease, which required me to have open heart surgery at eleven weeks old. In living with 22Q, I have learned to accept myself for who I am, and to hold onto a dream of who I could be. We all have our differences, but within these differences, we find the keys to creating happy, healthy lives. For me, after having been diagnosed at 24 years old, I realized one year later that it was a new beginning, and I started searching for a new way of thinking, eating, and living.  

This passed weekend in Columbus, Ohio, Rick Guidotti, a photographer from New York who created Positive Exposure also delivered a keynote speech that made me think differently about what I was doing in my life. His message is this: Change How You See, See How You Change. His message continues to resonate and inspire my thinking. 
At the conference, I met many children with the syndrome, and this allowed me to imagine and embrace my past, appreciate my present, and to envision my future. Even though we have many health challenges living with this syndrome, it's important to keep our desire to grow and learn alive. In speaking with 22Q parents, I was reminded of the importance of strengthening the desire to learn and move forward in my life. It also reminded me that our parents are our first teachers and mentors and they set the bar for finding others that help us travel our path to adulthood. 

The 22Q Center at the Nationwide Children's Hospital AND the Dempster Family Foundation were incredible this weekend for so many reasons. The Dempster Family Foundation was found by Ryan Dempster, a former pitcher for the Chicago Cubs and Boston Red Sox. They created the foundation to raise awareness of 22Q and also educate the public about the syndrome. When I go to these conferences, everyone at these conferences are like family. Everyone is on the same page. Everyone is searching for information, for hope, for faith and these conferences provide just those things and MORE! I met a young woman at the conference who is an ambassador for the Dempster Family Foundation; she is so inspiring, smart, gorgeous, and I was so comfortable talking with her, getting to know her and she was just amazing! Her name is Kristina and we had a blast when the Dempster Family Foundation's Executive Director Michelle Breedlove-Sells showed us the inside of the 22Q Mystery Tour Bus and we got to work with kids and teens on creative projects all afternoon! 
The 22QMystery Tour Bus is the only mobile awareness campaign that raises awareness of 22Q all over the country. It's has made an enormous difference in raising awareness of this condition and also educating the public about it! Here are a few photos below of this beautiful bus that Michelle Breedlove-Sells decorated and it was so colorful and so beautiful! Check them out and, if you are not following me on Snapchat yet, you are invited to do so and many things happen that you don't want to miss!



THE BACK OF THE BUS: COMFY, COLORFUL SEATS AND WALLS!

Left: Michelle Breedlove-Sells (Executive Director of the Dempster Family Foundation)
Middle: Photographer Rick Guidotti (Creator of Positive Exposure)
To the Right: (Me: advocate, artist, philanthropist)

I want to say a special thank you to EVERYONE at the 22Q Center at the Children's Hospital in Columbus, Ohio, Michelle Breedlove-Sells and everyone at the Dempster Family Foundation, Rick Guidotti, and Richard Kirschner MD! I hope there is another conference like this soon! Thank you for reading! Subscribe to my blog and never miss a post!
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