The Many Faces of Moebius Syndrome!

July 15, 2009

To Whom this may concern,

Hello, my name is Leslie Dhaseleer and I am from the Charlevoix area. I am writing in regard to the condition I was born with called Moebius Syndrome. There are only about 1000 people in the United States that we know of with this condition, three of which live in this area, two in Charlevoix and one in Boyne Falls.

Those with Moebius Syndrome are born without the ability to smile, frown, or show facial expression. They are often born with clubbed feet, crossed eyes that will not turn from side to side or close properly, and webbed fingers and toes or other limb deformities. We stand out in a crowd whether we want to or not, and are often misunderstood or thought to be mentally impaired because of lack of facial expression.

Because this condition is so rare its very difficult for us to relate to the rest of the world and to keep up with medical news that might be helpful in our own personal struggles. I heard about the Moebius Syndrome Foundation and began attending conferences that are held every two years. My first experience going to a conference and meeting others, was truly life changing. To live a lifetime not ever seeing or knowing there was someone else like me was very lonely and isolating.

I became concerned when I saw so many people out there that cannot afford the costs of travel and conference fees, I wanted to find a way to help. In conjunction with the Moebius Syndrome Foundation I started a Conference Scholarship fund with the sale of note cards I made utilizing my photography. I was able to raise $1000.00 to start the fund and am looking forward to helping others come to the next conference. We only have one year to build up this fund, the next conference is scheduled for July of 2010 and will be held in the Denver Co area.

One thousand dollars was a great start but I am afraid it is not much when trying to help others pay for conference expenses. My husband Allan and I believe strongly that these conferences change lives and have seen it first hand. We will be adding an additional $250 to the fund and are hoping to get others to match this amount or send any amount into the Foundation that will help to get this fund on its feet.

If you would like more information or would like me to give a personal presentation on Moebius Syndrome please contact me by email at viphoto@hotmail.com, or by phone 231 547-6940 or my cell # 231 409-1793.

The Moebius Syndrome Foundation is recognized as a charitable organization-501 (C)(3) by the Internal Revenue Service. Contributions are tax deductible. EIN# 13-3753992 Donations can be mailed to:

Moebius Syndrome Foundation (Con-Scholarship Fund)

P.O. Box 147

Pilot Grove, MO 65276

Or on line at www.moebiussyndrome.com Please refer to the Conference Scholarship Fund.