Monica Jacobs and Megan Boers

This past week as our 

family traveled home 

after our end-of-year 

vacation, we had an

experience that we won't soon forget. 

Kelsey,my 22 year-old with Sotos syndrome was singled-out as we went through airport security in Charlotte, 

North Carolina. 

Kelsey likes to wear shirts with "bling" on them (sequins and sparkles) andshe never makes it through the body scanner without requiring a pat-down.  She's done this before - so really there was no surprise, until the TSA agent decided to swab her hands for foreign substances and she tested positive...for NITROGLYCERIN!!!  What???  Now she required a full body pat-down and detailed search through all her carry-on belongings.  

As the TSA agent made Kelsey stand to the side and told the rest of the family that we must stand back and cannot touch her, she, of course, started to get upset.  Suddenly a new TSA agent appeared and immediately asked my husband if Kelsey had "disabilities".  He said, "yes" and this new TSA agent took over.  

more.....

Meet Lauren West

New SSSA Board Member

This past February the Board unanimously approved the selection of Lauren West to the SSSA Medical Advisory Board.  Lauren has literally "grown up" attending SSSA conferences and spending time with our children since her parents are 

Dr. Brad and Becky Schaefer.  

Lauren graduated from the University of Nebraska - Lincoln with an M.S. in 

Speech Language Pathology and currently works for the Omaha Public School district.  She has spent the last 2 ½ years with middle school age children who are deaf or hard of hearing.  Additionally, her caseload consists of 7th and 8th graders who have communication disorders including language impairments, speech sound impairments, fluency disorders, autism and severe cognitive communication impairments. 

Lauren attended the 2013 conference in Minneapolis and assisted many families with questions regarding speech.  She is also helping plan the 2014 conference in Little Rock and will be offering one-on-one parent appointments as requested.

"I would be truly honored to be more part of an organization that has always been close to my heart.  I am grateful to have had wonderful opportunities to be involved in the planning of a meeting as well as attended 10 or more meetings as a child.  Now, as a professional working with children who have communication disorders, I have a personal and professional interest in this organization and feel that I would be able to give back by offering support to families.", Lauren said of her acceptance to the board. 

Welcome aboard Lauren!

The online group was established as a way to give parents a chance to communicate with other parents who have children with 

Sotos syndrome. 

The group was started long before Facebook and other social media gave us the opportunity to reach a wider audience. The group has grown to have quite a few members and has given us a family type feeling. I have made life long friendships since becoming a member ten years ago.

Joining is easy,  

-go to www.yahoo.com

-type in "Sotos syndrome" in the groups search section. 

-the group will pop up with a list of instructions on how to join

-the group is now a "closed" group which means that myself or Ed St.Clair, co-owner, will have to approve your membership. 

-all we would need for the approval is a reason why you want to join the group. 

Kellie and her son Daniel

Make a tax deductible donation to the SSSA 

TODAY!!

To donate using PayPal, 

click on one of the

 dollar amounts below.

$10  $20  $50  $100 

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To donate by check

Mail to:

SSSA

P.O. Box 4626

Wheaton, IL  60189

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THANK YOU!!

THANK YOU

to all those who have sent 

in stories, article ideas 

and especially 

PHOTOS.

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