Coming: a great conference summer for the Moebius Community

And I am very excited about it.  The Moebius Syndrome Foundation Conference for July 2016 is coming up this July in Long Beach, California; and it is going to be outstanding.

You know, I haven't been able to post for a bit, because I've been so busy with work.  But I wanted to take a moment and tout, not only the conference...which is always great, and which, when I first attended it back in 2002, literally changed my life...but also emphasize just what it and the MSF does, and is glad to do, for Moebius adults.

Let's focus for example, on all the conference sessions that will benefit Moebius adults and Moebius teen-agers.  If you look for example at the conference agenda, you see that there's quite a lot.  For example:

1] This year for the first time we will have a Moebius buddies program.  Attending your first conference as a Moebius adult?  Worried about what to do and where to go?  Someone will be there to be your friend and to help you.

2] Noted disability activist and motivational speaker Bonner Paddock will deliver a keynote address on pushing beyond limits.  What can you do with your life?  How can you both acknowledge the obstacles in front of you and yet, also, confront them?  Bonner Paddock's speech will be important for you.

3] There will be sessions devoted specifically to Moebius adults and their needs.  There will be a session helping to provide steps to social confidence and social control.  There will be another session offering customized approaches to finding the right job for you.  There will be a special panel on advocacy and awareness.  There will be another session devoted to helping youth prepare for employment success.  There will be one emphasizing why post-secondary education is important.

4] Also--importantly--there will be many sessions devoted to allowing Moebius adults to talk and to share and to focus on what is important both for them and to them.  On both the Friday of the conference and on Sunday, there will be "Just for Moebius adults" sessions.  There will be a panel discussion focusing on adults "speaking from the heart."  There will be a session just for Moebius adult ladies.  Do you want to share your triumphs?  Or do you want to express just how difficult Moebius can be sometimes to live with--and we know it of course can be?  Then this conference and these sessions are for you.  We want you to come.  We want you to share.  We want to listen--to whatever you have to say.

5] There are all kinds of other sessions, too.  There will be a social skills workshop for Moebius teens. There will be a session for Moebius "teen talk."  There will be a session on therapy and service dogs--more in our community have service dogs than you might think, and they are such a great benefit.


And let me also stress all the other things the Moebius Syndrome Foundation provides for Moebius adults.

On the MSF website, there's an excellent article for Moebius adults by Matthew Joffe, where he writes about his own personal journey.  There's a lot to learn from it.

Did you know the MSF now has a scholarship program to help those Moebius adults, who want to go to college but need money to afford it, to do just that?  Check it out.

The MSF provides employment resources, it makes available resources and support for those who wish to plan and make happen Moebius get-togethers on their own, and it provides scholarships to Moebius adults attending the conference for the first time who need some money to help afford the trip.

All of this we are glad to do, and proud to do.  It's a crucial part of our mission.  We're excited about the upcoming conference.  We hope you are too!

HIS SON IS NOT "NORMAL", AND HE COULDN'T BE MORE PROUD

Read the story below about Moebius hero Willem Wuebben, written by his father, Mike.  It's a great story.  From themighty.com.

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I remember what our pediatrician said about our newborn son, Willem, just before signing the discharge papers. There’s something “not normal” about him, she said.
Willem has been diagnosed with Moebius syndrome, Duane Syndrome, strabismus, facial paralysis, hypotonia, cataplexy, narcolepsy, vertigo, sensory processing disorder and severe acid reflux among other maladies.
He has been examined by neurologists, geneticists, psychologists, ophthalmologists, homeopaths, chiropractors, sleep specialists; behavioral, physical, occupational and speech therapists.
Suffice to say, the kid has some challenges.
Willem is 8 years old, and there is a long list of things a typical 8-year-old can do that he can’t.  But he can have blood taken without flinching. He can swallow a pill with no water. He can navigate our entire house while bouncing on an exercise ball. He can recite just about every comic from “Far Side Galleries” 1, 4 and 5.
But Willem’s greatest superpower is his compassion. When his older brother is sad, he is the first to console him. He apologizes to my wife and me for mistakes his sister makes.
His facial paralysis makes it impossible for him to show expression and affects his speech.  That, coupled with his self-stimulatory behavior, have made Willem quite shy, and he has a tough time making friends.
Then came Reece — a bundle of energy who occupied the seat next to Willem in second grade.  I’m not sure you could find more polar opposites than these two boys. Willem is very sensitive to touch, but for some reason he lets Reece climb all over him. And Reece somehow finds the patience and attentiveness to hear Willem’s quiet voice tell a joke.
The boys were split into separate classes this year, but they still ride the bus together and have play dates. And this week, Reece’s teacher shared with us an assignment he did about his friend that warmed my heart.

It read:

My best friend is Willem. Willem wiggles a lot. He is never not nice. He cares a lot. He is friendly. He never gives up. He shares a lot. He is friends with everybody. He helps people. He plays with everybody. He is the kindest kid on earth. He is lovable.

It’s been said if you have one true friend you have more than your share. So this is just one more thing that’s “not normal” about my son. And I couldn’t be more proud.