On the Bus - August 7, 2013

My name is Michelle Breedlove Sells and I am the Executive Director of the Dempster Family Foundation. I am godmother to a child diagnosed with 22q11.2 Deletion Syndrome (22q), and I drive the 22Q Mystery Tour Bus, the world's only mobile awareness campaign for 22q.

I am not an 22q expert. I do not have all the answers, and I will inevitably be unable to please everyone all of the time. What I am is committed. I am committed to bringing about greater awareness of the syndrome my goddaughter was born with four years ago. I am committed to this organization that my friend founded in honor of his daughter (my goddaughter). I am committed to working alongside professionals who know this diagnosis and are actively creating genuine resources for those affected AND expending energy to educate their peers as well as the general public about 22q Deletion Syndrome. I am committed to the families who get involved where they live and show love and support for their fellow 22q community members.

I am committed, but I am not the solution. The Dempster Family Foundation is not the solution. WE are the solution! "We" as in you, as in me, as in our collective network of friends, families, co-workers, neighbors, congregations, etc. WE can make a difference together, but I assure you it will not happen overnight.

If you are a scrapper, if you've ever been the underdog, if you've been waiting for a "dare to be great" opportunity your whole life—well, here it is! 22q Deletion syndrome is likely far more common than the quoted statistics , but in no way does that mean we will one day be magically heard above the thousands of other worthy causes or that our needs will be magically met simply because of an incidence rate.

Civil rights affected far more people than 22q, and it was a long, long, long road to solutions which still today are far from perfect nor have made up for the shortcoming of the past. Women's suffrage is another great example of a cause where there were far more people affected (roughly half the population) gaining the vote was achieved only after a long string of disappointments and roadblocks. These movements took decades; ours likely will too.

Don't get me wrong I have visions where somehow I get to the "right person" and all of a sudden the doors to public awareness come flying open and everyone knows about this "rare" syndrome that isn't so rare at all. I dream that one day I wake up and there are hundreds of families standing in my office waiting for direction and a plan of action. But, vision and dreams are just that,--vision and dreams—not the reality of moving a relatively small yet very worthy cause from virtual anonymity and into the spotlight.

I am overwhelmed by the enormity of this challenge, but I have always been a scrapper, an underdog, a woman seeking a "dare to be great" opportunity. 22q Deletion Syndrome is my cause, my opportunity to leave a legacy of positive change for my goddaughter, for my stepchildren, for my family, for the 22q community, and for myself.

I am taking on this challenge with my eyes wide open. I am confident there will be great successes as well as major disappointments along this road. But my bags are packed for a long, long trip. Because I AM ON THE BUS FOR 22Q!

Love,

Michelle Breedlove Sells

Executive Director, The Dempster Family Foundation