SSSA NOTES

February 2014

In This Issue

Making Memories

2014 Arkansas conference

Website news

Dues

What is a "Good Life?"

Tell Us Your Story

from the President's husband

SSSA Winter Board meeting update

Thinking about going to Arkansas?

Order DVD/Handbook

Making Memories

by Kathie Snow

Every single day we make memories. Holidays, birthdays, and other special occasions are in our memory banks, as are ordinary experiences at home, school, play, work, and more-like a look,a touch, a conversation.

But our memories aren't only

recollections of good days, bad days, important days, and such. Memories-the culmination of daily experiences-also weave the fabric of a person's life, shaping the person's character, ethics, attitudes, behaviors, and much more.

Other people contribute to our memories,

including parents, other family members, teachers, neighbors, classmates, coworkers, acquaintances, and maybe even strangers. As we grow up and take more control of our lives, we also make more of our own decisions that create new memories: how and where we celebrate holidays and special occasions, who our friends are, where we go to college, what job we choose, where we live, who we marry, and more events, big and small.

But the same may not be true for many children and adults with disabilities. For a variety of reasons, they may not have as much control over their own lives as compared to people without disabilities, so others make decisions for them, "do" for them, and/or exert control over them.Thus, their experiences-and the memories that are created-may be determined by the actions of others: parents, educators, therapists, service providers, etc.

Do we recognize our

responsibilities in this area?

click here to read more

"Making Memories"......

CONFERENCE

registration opens March 1

The Conference Registration link

OPENS

March 1, 2014

Plus, check out the updated

information on the web site

2014 SSSA Little Rock Conference

Embassy Suites Little Rock

Arkansas Conference Hotel

reserve a room at our discounted rate

Learn, network, bond!

Our Website

Supports, Educates and Informs

Around the World

On average approximately 400 people visit our web site each week. The majority of individuals live in the United States. The second most popular country to access www.sotossyndrome.org is the United Kingdom followed by Canada and then Australia.

Although our web site is accessed most by individuals in countries that speak English as the native language, each week from 50 - 60 individuals from non-English speaking countries all around the world check in to learn about Sotos Syndrome and our organization.

In the six months that our new web site has been active, we have supported, educated and informed individuals living in the U.S., the U.K., Canada, Australia, Italy, Ireland, the Netherlands, Germany, Sweden, Finland, Belgium, Switzerland, Denmark, Spain, Poland, Portugal, France, Norway, Greece, China, Japan, Thailand, Malaysia, Philippines, Taiwan, Russia, India, Mexico, Ecuador, Costa Rica, Brazil, Israel, Croatia, Bosnia and Herzegovina, Saudi Arabia, United Arab Emirates, South Africa and Algeria.

SSSA dues =

support

The way we support and inform our members is through our web page, toll-free phone line, SSSA Notes, our informational DVD and Handbook for Families and our Annual Conference.

So, even though we are an organization run totally by volunteers, (mostly parents of individuals diagnosed with Sotos or similar syndromes), we still have to pay for these tools and services that we offer to our members.

That's where your dues come in!

Please help us continue to help you and others - by paying your annual dues of $35 dollars now.

If you live outside of the United States and use PayPal - choose to pay in U.S. dollars and your funds will automatically be converted.

If you wish to pay by check - remember we take only U.S. funds.

Click here for more information

http://sotossyndrome.org/pay-my-dues

Thank You to all the

members who have recently paid!

editor's article:

What is a "good life?"

Joining Forces Conference in OK. partners to find out

"The Oklahoma Family Network provides emotional and informational support to families raising children with special needs, primarily, by matching parents seeking support to an experienced, trained, Support Parent. Training is provided as well as opportunities for families to use their wisdom in leadership roles. Empowered, knowledgeable families are able to partner with the professionals who serve their children more successfully than those who are not as knowledgeable regarding their child's issues and the services for them."

The OFN helps families find others who are just a little ahead of them to support them in finding resources and understanding the issues their child may deal with as they grow and develop.

This Year, Sheli Reynolds from Missouri came to speak about

Dreaming the Possible Together:

Strategies for Charting a New Life Course

Here is a link to the Oklahoma Family Network page with Sheli's power point. Well worth the time, I walked away with a dream. A working dream to become my son's possibility.

Here is a small part of a presentation viewed at the conference. We asked the question, "What is a "Good Life"?"

Here is what William Hefner dreams is his "good life".

Tell Us Your Story

Find Support.

Give Support.

Learn Something.

Teach Something.

GET INVOLVED!!

Send your comments, book reviews or a story about your experience to us for inclusion in the SSSA Notes:

newsletter@sotossyndrome.org

No access to email?

Send submissions to:

SSSA

Newsletter Submissions

PO Box 4626

Wheaton, IL

60189

click here

THANK YOU

to all those who have sent in stories, article ideas

and especially

PHOTOS.

Keep Sending them in!

See you next month!

from the

President's husband

"Dad's morning 2014"

Welcome fathers,

My name is John Jacobs.

This July will be my fifth conference as a "Sotos dad". I hope the experiences I share below will encourage you to register when it opens on March 1!

It was only five short years ago I was in your shoes. What I hope you experience at the conference are things I have grown to look forward to each year. A very friendly, fun, educational and most importantly loving atmosphere. This is my favorite time of year because you get to see old friends but also make new ones, as do our children.

I want to bring attention that this year's "Dad's Morning" is Friday, July 18th. We will be having an outing for the dad's to play golf. Lunch will be served, followed by a gentlemen's greeting at the courses club house. More details will be available closer to the date of the conference.....more

Monica and John Jacobs

SSSA Winter Board Meeting

Kansas City, MO

Bryan Shelhamer, Board member

and Joanne Weick, webmaster

pictured below

On Valentine's Day, while many were out celebrating with their "valentine", three board members and two officers were making their way to Kansas City for the annual SSSA Winter Board of Directors meeting held on Saturday morning,

February 15th. Those who could not attend in person, utilized the

conference bridge line (donated by Kevin Williams, SSSA member and former board member) to join the meeting via phone. The board discussed recurring items (financial reports, past and future conference reports, membership, newsletter), welcomed new volunteers to the organization (Thank You, Deja Cruz and Karen Osborn) and discussed new business (public awareness/promotional items,automatic membership renewal). The meeting was adjourned in four hours with the sum

mer meeting scheduled for Friday morning, July

18th, at 9:00 am.

THANK YOU to Joanne and Kristin (officers) and board members Bryan, Carrie and Ellyn, and conference coordinator, Karen, who all attended in person and board members Kellie, Michelle, Monique, Lindsay, Susan, and James, who attended via phone, and Carolyn, SSSA Canadian liaison and membership coordinator, Deja, also attending via phone, for giving a part of your weekend to the SSSA!! I appreciate it more than you know!!

P.S.......there are some fun times with this winter board meeting as we had dinner on Friday evening at Kansas City's famous "Oklahoma Joe's", lunch after the meeting at "Chuy's", followed by Kansas City's premier "shopping district" and dinner at a winery! You will hear me many times say "I love my SSSA family" : )

~Monica Jacobs, President

Carrie Leddy and Monica Jacobs

Joanne Weick, Karen Osborn,

Kristin Gilbertson and Carrrie Leddy

Kelsey, Joanne's daughter, "Skyped" in to say

Hello during the meeting. "Hi Kelsey!"

After the board meeting "de-brief" at Chuy's.

5 free things to see and do around Little Rock

by the Associated Press

Arkansas is nicknamed the Natural State, and its capital lives up to the moniker. There are plenty of ways for people to experience the great outdoors in and around Little Rock. Plus, many of them are free.

read on......

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.

A Handbook for Families

(Third Edition)

$15 plus shipping

English Spanish

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

Make a tax deductible donation to the SSSA

TODAY!!

To donate using PayPal,

click on one of the

dollar amounts below.

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To donate by check

Mail to:

SSSA

P.O. Box 4626

Wheaton, IL 60189

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THANK YOU!!

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!