Sotos Syndrome Support Association


SSSA NOTES

Conference Edition

June 2014

 

  



Last minute tips and reminders 

before attending the conference:

  • remember to bring something for the brag station to show off  achievements of your child 
  • bring an item for our silent auction - all proceeds go to the Carol Richey Fund which assists first time attendees
  • pack for Arkansas weather 

 

  
In This Issue
SSSA General Meeting
Travel tips
SSSA Jobs Box
Little Rock sights
President's letter
Silent Auction
2014 Arkansas conference
Order DVD/Handbook

 

 

 

notice:
SSSA General Meeting

   

 

meeting
SSSA General Meeting
Minneapolis, MN 20133


Take Notice that the 
Annual General Meeting of the Members of Sotos Syndrome Support Association 
will be held at: 

 

Embassy Suites  Little Rock, Arkansas

11301 Financial Centre Parkway

Little Rock, AR

USA 72211  

 

Sunday, July 20, 2014 at 9:00 a.m. local time for the following purposes:

 

1. To receive the financial report of the            treasurer

2. To receive the membership report

3. To elect directors; and

4. To transact such business as may be properly come before the meeting or any adjournment thereof.

If you are unable to attend the meeting, you may appoint another person to cast your vote by completing, signing and returning the attached form of Proxy. You may appoint any person by inserting that person's name where indicated or you may appoint the President, Monica Jacobs, by checking the box next to her name.

 

 
 
President Monica Jacobs
at the General Meeting
Minneapolis, MN 2013  

 

 

 

2014 SSSA Conference
Little Rock, Arkansas
July 18-20, 2014


   

The Sotos Syndrome Support Association holds a conference one weekend every summer. Activities take place from Friday afternoon through Sunday afternoon.

Families and professionals come from all over the world to learn, network and bond with one another. We combine a program of speakers with social events for the whole family to educate and inspire families on their journey with Sotos Syndrome.

Registration is $140 per person.

  

Minneapolis, MN 2014

 

**There will be an opportunity to take part in a research study on auditory processing.  Dr. Atcherson will be conducting screenings on Friday afternoon, Saturday and Sunday.  Please see additional information at the registration desk and schedule a screening time if you are interested in participating (FREE)!!

 

**You asked and we are providing!! Several families suggested last year that there be more time for simply talking with other families and networking.  This year Dr. Schaeffer will be hosting a dessert bar on Saturday evening from 7:30 to 9:00 PM.  Take this time to relax and talk with other families in one of the banquet rooms at the hotel.

 

**Bring your dancing shoes!!  Friday night entertainment will include a DJ playing music for the younger kiddos and moving on towards the favorite tunes of the older kids and even us old parents!!

 

**Brag station!  Tell us what your kiddo has been doing over the years.....poster board with pictures, medals, trophies, pictures of them doing what they enjoy. 
 
old friends
Kelsey and Kelsey
Minneapolis, MN 2014

 

 


Open positions
get involved with SSSA

   

The Sotos Syndrome Support Association is a nonprofit organization created in 1988 by the parents of individuals with Sotos Syndrome.  Decades later this organization is still run solely by volunteers.

 

SSSA Mailer 


 The SSSA Mailer is responsible for mailing out the following:

  • Information Packets - includes basic information about Sotos Syndrome and the SSSA. 
  • New Member Packets - includes 10+ medical articles written by researchers over the past decades, additional information about our organization,etc
  • DVDs
  • HandbooksEstimated time required - five hours per month. Click here for complete job description.
Estimated time required - five hours per month.

 


SSSA Phone Support 

 

The SSSA Phone Support volunteer will need the following:

  • Cell phone or home phone.  The 1.800 number will ring into a cell or home phone.  A message set up on the phone will need to indicate that this is the support line for the Sotos Syndrome Support Association.
 

The volunteer will complete the following: 

  • Answer calls and/or return calls within three days, if possible.
  • If it is not a general question, advise the caller that his/her question has been forwarded to an appropriate SSSA volunteer (they may call regarding their membership and/or dues, conference information, etc.) Click here for complete job description.

Estimated time required - five hours per month.

 

 Interested? email Monica Jacobs

bd mtg 2SSSA Board Meeting

Minneapolis, MN 2013 

 

 

 

Little Rock
Golf


   
 

SSSA Conference Golf Outing

 

Registration indicates there are nine interested golfers and hopefully some of you have decided since registering that you want to participate!  Although this has traditionally been a "fathers event", females are encouraged to join in the fun!! 

Please meet in the hotel lobby on Friday morning, June 18th, at 7:00 am.  The Little Rock Country Club will host the outing for the avid and not-so-avid golfers!

Please email John Jacobs if you plan to golf since he will be finalizing arrangements with the course in the next two weeks.  Email him at jinglehimmer1@gmail.com.

  

 

  

  

  

things to do  

Little Rock, AR

        

 

Arkansas Art Center 

 

Clinton Library

 

 

Downtown Little Rock Partnership

 

Eat: Downtown Little Rock

 

Eat: Little Rock

 

         Big Orange                           Pizza Cafe

 

 

 

River Market

  

 


 

 

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 
 ______ 

To donate by check

Mail to:

SSSA

P.O. Box 4626

Wheaton, IL  60189

_______

 

THANK YOU!!

 
 

  

 

 

 

President's 

letter

  

 

 

Summertime....for our family the meaning of summertime changed in 2006 when we attended our first conference in Anaheim, California.  In July we will be heading to Little Rock, Arkansas for our ninth consecutive conference.  Summertime still includes schools out, sunny days at the pool, hamburgers on the grill and driveway get-togethers but all of this is centered on where and when the SSSA Conference takes place.  It is our priority for many reasons.....

First conference, I was nervous, scared and VERY emotional.  I had tears at the Friday night dinner, tears of sadness because I was certain Megan had what the other kids had just by looking at them and tears of happiness....because Megan looked just like the other kids and we weren't on the journey alone.  I had never met any of these people before, I met a few parents and "soaked in" everything I could that weekend.

Second conference, Omaha 2007 - I saw some friends from the previous conference and met new ones.  I didn't ever want these conferences to stop because it was so rewarding and so important for new families to attend......I will volunteer to help!  I will give back to the organization, after all, how much time could being the SSSA Medical Advisory Board Liaison really take?

Fast forward...2014 in Little Rock - Whew.....finishing up four years as President of the SSSA and remembering that baby step I took in Omaha by helping just "a little"!  For our family the conference is still a beautiful, rewarding experience but now each of us has our own reason for attending....for my husband and Megan's step-dad, John, it is the golf outing on Friday morning which has in recent years, carried into a Saturday outing also!  These dads can share experiences about their sotos journey in a relaxed atmosphere on the golf course.  For Megan, she has made so many friends over the years and begins asking the day after conference is over who is all going to next year's conference!  She also loves being the social coordinator, welcoming all the first-time kiddos with her bright smile.  Cole, my almost 18-yr old, well...he may not always say it is the highlight of his summer but I do see the way he smiles and looks at the other kids with sotos and just shakes his head...a reminder to him that he isn't the only sibling dealing with "all of this".  AND...for me, I can't even begin to put it all into words......wonderful friendships made throughout the years, rekindled each year and with each conference, new friendships, new experiences and yes, sometimes new challenges.  All of this PLUS learning ideas from professionals in various fields that can help me continue to raise Megan to be the best that she can be.

It isn't too late!!  Please plan your trip to Little Rock, register on the SSSA website and prepare for a wonderful experience July 18 - 20th!

  

monica and william 

Monica Jacobs and Wiliam Hefner

Mineapolis 2013 

 

 

 

 

Silent Auction

donations needed

  


   

  auction

Silent Auction/SSSA Conference

Minneapolis, MN 2013

 

 

The silent auction is held Friday night at this year's conference in Little Rock, AR. 

The Silent Auction at every conference is always a big hit.

 

Ideas include gift cards, toys, movies, jewelry, favorite sports team memorabilia, well heck, we women like to shop for EVERYTHING right??  You get the idea and all proceeds increase the Carol Richey fund, which helps families attend their first conference! 

 

Thank you.

 

 

 

2014 CONFERENCE
registration is open

   

    

Check out the updated information 
on the web site
 

 

BOOK YOUR ROOM BEFORE JUNE 19 
TO RESERVE A ROOM WITH DISCOUNTED RATE 

  

mother daughterSSSA Conference
Minneapolis, MN 2013

  

Conference Registration 

 

Learn, network, bond!

 

   Minneapolis, MN 2014 

 

 

 

Field Trip
Saturday


   
At the conference, there is a Saturday Field Trip.  We take the older children, 12 and up and assisted adults on a supervised field trip to a local tourist attraction.  Both children with Sotos syndrome and their siblings often find these experiences very rewarding as they spend time with other children who are "just like me".

   

This year the THE OFFSITE Field Trip FOR TEENS 12  and over is the Museum of Discovery. 

 

Siblings ready to go on the Field Trip

Minneapolis, MN 2013

 

 

Photo of DVD and Handbooks
Order DVD or Handbook Now!

 DVD:

A Journey from Diagnosis 

Through Life

 created by the SSSA

 

$5 + shipping

 

This 30 minute video contains interviews of doctors, families and individuals with Sotos Syndrome, explaining the basic characteristics, experiences and expectations of their journey. 

 

Buy Now           

 

                             

 

A Handbook for Families

(Third Edition) 

$15 plus shipping

 

           English      Spanish       

        Buy Now       Buy Now

This 64-page soft-bound booklet includes:
A Description of the Syndrome
  • The Newborn Period
  • Infants and Toddlers
  • Young Children
  • Adulthood
  • Differential Diagnoses
  • Genes and Hereditary
  • The Role of the Schools
  • Community Resources
  • Siblings and Families
  • The Wider Community
  • Coming to Terms

 Medical and Developmental Evaluations

  • Genetics
  • Central Nervous System
  • Internal Organs
  • Muscle
  • Skeletal System
  • Endocrine
  • Hearing
  • Speech and Language
  • Eyes and Vision
  • Development and Intelligence
  • Behavioral and Psychiatric

  

 

  To order the DVD or Handbook 

by check, please visit our site.

 

 

 

Book/DVD Order Form

 

 


Tell Us 
your story

   

  

Find Support
Give Support
Learn Something
Teach Something

GET INVOLVED!

Send us your story about your experience for inclusion in the SSSA Notes.
 
Send to:

No access to email? 

Send submissions to:

SSSA

Newsletter Submissions

PO Box 4626

Wheaton, IL

60189


Don't forget to include photos!
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HAPPY FATHER'S DAY!

 Disclaimer:  The SSSA does not endorse any of the medication, diagnostic procedures, treatments or products reported in this email newsletter.  The information is intended only to keep you informed.  We strongly advise that you check any medication, procedure or treatment with your physician.

 
 

Donate to the SSSA every time you search the Internet or shop online at select sites!!!

 

Search the web with Yahoo-powered GoodSearch.com and they'll donate a penny to the Sotos Syndrome Support Association when you designate the SSSA as your cause!