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.

FIVE BENEFITS OF PARTICIPATING IN A RESEARCH STUDY FOR A RARE DISORDER

If you were born with a rare physical difference, what could you do to help...not only yourself...but others, too?  My friend Natalie Abbott explains one thing you could do:

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Last month, I participated in what is called a natural history study at the National Institutes of Health (NIH) Clinical Center. In these studies, experts on a condition (in this case, Moebius syndrome) work together as a team to learn more about the condition for research purposes and also offer patients individual advice for their medical needs. I was the 40th person to participate in my protocol. I participated in this study to get input from some of the best doctors in the world, but the benefits went far beyond helping myself!
1. Everyone is an expert! As a person with a very rare disorder, it’s frustrating to encounter a doctor who not only has never had another patient with your disorder… but has never even heard of it! It was amazing to have every doctor I encountered be familiar with Moebius syndrome… and beyond that, they were experts in their fields!

Natalie and her service dog at the National Institutes of Health Clinical Center

2. How many appointments was that, again? I had 23 different appointments over five days. Can you imagine trying to schedule that many different appointments at my HMO? I can’t! The sheer number of doctors and fellows I saw was astounding!
3. I got to go to an amazing place. Research happens in many interesting places — I ended up at the amazing NIH Clinical Center to participate in the natural history study for Moebius syndrome. It was an incredible environment to be in!
4. Sometimes I got paid! Grants enable patients to participate in research without an undue financial burden — and sometimes even offer a financial compensation for time spent participating! I couldn’t have participated without the assistance.
5. You learn all about yourself and your medical conditions. With a complicated medical diagnosis and history, there are things that somehow get lost along the way; for example, apparently my legs are very different lengths — who knew! A fresh set of eyes on your condition can also help you figure things out that other doctors might have missed.
For information on some of the research opportunities currently available through the NIH, see www.clinicaltrials.gov.

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FIVE THINGS YOU NEED TO KNOW ABOUT PEOPLE WHO LOOK DIFFERENT THAN YOU

By my good friend Kelsey Ferrill.  Great stuff here!  Read and learn:

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As someone with a visible difference, I wish I could say society is nonjudgmental and unprejudiced. But alas, I cannot. For the most part, I don’t have trouble when I go out in public. Maybe I’ve just grown to be used to it, but I don’t notice a lot of staring or pointing. Sometimes people (mostly kids) do a double take, but I haven’t experienced much other than that.

Of course, there are the incidents that stick out in my mind. One time, a random person came up to me at the mall and asked if there was something wrong with me and why I looked this way. There was another time when I working at a retail store, and a kid said, “I have no idea what she’s saying.” Lastly, one of my friends with Moebius syndrome called a kid “really ugly” on Facebook. These things are not OK.

So here’s what I want society to know about anyone with any kind of difference:

1. We know when you’re pointing at us or making comments about us.

We can see you doing double takes. It makes us feel uncomfortable, and it draws attention to what we generally don’t want to draw attention to: our difference. If you really need to know why I look the way I do, please ask. I like to educate people about Moebius syndrome. I even wear a Moebius syndrome bracelet.

2. Even if you’re trying to be helpful, you could be drawing attention to us, which can be embarrassing.

During my first semester of college, one of my instructors printed out the slides he was going to show the class for me and only me. At the beginning of class, he came right over to my desk in front of everyone (who I didn’t know well at the time) and gave me a huge stack of printed out slides. They were printed in a huge font. He was definitely trying to be helpful, and I appreciated that. But it was so humiliating! I wish he just would’ve asked me beforehand if I needed visual accommodation, which I didn’t.

3. Don’t assume we need any help, especially if we haven’t asked for it.

This kind of goes hand in hand with my previous point. Again, if we’re singled out in front of others, it can be quite humiliating. Please ask us in private if we require any kind of help. Also, please don’t assume that just because we look different, you have to talk slower and louder to us. Just because we might look a little different doesn’t always mean we have cognitive disabilities as well.

4. If your kids have questions about our appearance, don’t just shush them to avoid embarrassing us.

If they say something inappropriate within earshot, tell them it’s not nice to say things like that. Then explain why you shouldn’t judge people based on their differences. If you don’t explain to kids that some people are different, they won’t learn. Teach them to be tolerant and compassionate.

5. There is so much more to a person than their appearance.

We are so much more than what we look like. We all have dreams, goals, families and friends. We all seek tolerance and acceptance. We’re all just trying to find our place in this world like everyone else. Judging someone by their looks is like judging a book by its cover. The cover may not be the most beautiful or extravagant, but if you pass it up because of that, you might miss out on a really amazing book. People are like that, too. You can’t tell who someone is just by looking at them. Give everyone a fair chance.

Don’t be afraid to talk to someone who is a little different from you. Even if it’s just saying hello, it can make someone’s day to know you saw them just as another human being, not as someone different.

 

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MOEBIUS SYNDROME FOUNDATION: NEW SCHOLARSHIP PROGRAM

Those of you with Moebius who are either thinking about attending college, or are already are doing so; plus those Moebius parents out there whose kiddos will be attending college--you all want to take careful note of this.  We are very proud to be rolling out this program:

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The Moebius Syndrome Foundation will award three (3) scholarships of $2,000 each, to individuals who have Moebius syndrome and are pursuing post secondary education in the Fall of 2016.  This includes education at colleges, universities, or other forms of post secondary education and will be paid directly to the institution.

[There is a link on the MSF website page for the scholarship that will allow you to download the application form. Go to the link I've included above.]

You will want to submit the form with:

A one page essay on why you should receive this scholarship.

2 letters of reference from teachers, employers, etc.

A transcript from your high school or college/university/post secondary institution.

Submit essay, letters of reference and all written correspondence in one combined Microsoft Word File to scholarship@moebiussyndrome.org. The transcripts should be sent as a PDF file. Completed applications are due by midnight EST on April 30, 2016. Only complete applications will be considered.

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Good luck, applicants; and we look forward to helping, in the years to come, many young people with Moebius as they pursue their dreams of a college degree and the career they wish to pursue.

MOEBIUS SYNDROME REMAINS IN THE NEWS!

More Rare Disease Day happenings!  Read on about Ceridwen Hughes and a special photo project:

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When you look at this child what do you see? That's the question photographer Ceridwen Hughes is posing with 'The Rare Project'.

Hughes is sharing her project to mark the ninth international Rare Disease Day on Monday 29 February.

It is her hope that as well as raising awareness about rare diseases and their impact on children's lives, the project will also serve as a reminder that people with rare diseases are not defined by the diagnosis.

'The Rare Project' includes a shots of Hughes own son Isaac, who has Moebius Syndrome, a neurological disorder that causes facial paralysis.

"People often make judgments based on what they expect him to be able to do and sometimes they do not take the time to get to know the real child," she said.
"Isaac is funny, determined, bright and really caring. Those who do not see beyond his condition are poorer for it."

Isaac was diagnosed with Moebius Syndrome when he was eight months old and at that time Hughes said she was told nothing more than the name of his condition. She received no further information or support and she felt very isolated.

Hughes set up the not-for-profit organisation Same But Different to raise awareness of disability and counteract prejudice through art ventures such as 'The Rare Project'.
Every photo in 'The Rare Project' features a child with a rare condition and is accompanied by background information from their family, so the audience can learn not just about the condition, but about the person it is affecting too.

"I want to try to break down some of the barriers that exist for those with disabilities and rare diseases in particular," Hughes explained.
"Often the person taking part in the project has never had a portrait taken before because they may be nervous or have challenging behavior.

"It does not matter what condition each person has, they are ultimately still people with their own likes and dislikes and they deserve to have a voice."
Hughes' hope is that the project will encourage people take the time to stop and think about how they perceive those with disabilities or rare diseases.

Some of the parents of the children involved in the project have also spoken out about why they felt it was important to be involved.
The parents of a girl called Nina - who has an abnormality in her Adam 17 gene and is thought to be the only known registered case in the medical literature - explained:

"It is important to reach as many people as possible regarding rare conditions, so that it no longer becomes a taboo subject, but something that is embraced, explored and understood by the public, leading to greater acceptance of the need to accommodate those who have rare conditions, with empathy, humanity and more resources to cover their special needs."

The parents of a boy called Alex, who has an inherited metabolic disorder called Glutaric Aciduria Type 1, added: "We wanted to take part in 'The Rare Project' because raising awareness and understanding of rare diseases is so important for us because like every family in the land, all we want is the best for our children.

"We want our son to be happy, to have friends and to have opportunities to fulfil his potential as much as he possibly can. This will only happen once more people are better informed about rare diseases and can be more understanding about those who are different from the 'norm'."

MOEBIUS SYNDROME IN THE NEWS

It is Rare Disease Day--and so meet our newest young heroine with Moebius Syndrome.  Her name is Jarene, and she hails from Singapore.  She and her mother have accomplished quite a lot.  Read more about it:

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When Madam Sally Kwek's daughter was diagnosed with having special needs, her family thought she was crazy to push her daughter to learn skills such as reading, writing and going to the toilet on her own.

But the 39-year-old mother of one thought otherwise.

She believed that eight-year-old Jarene, who had been diagnosed with Moebius Syndrome, was capable of achieving things just like other children.

Moebius Syndrome is a rare neurological disorder characterised by weakness or paralysis of multiple cranial nerves. In the US, it is estimated that this disorder affects one in 50,000 live births. There is no data on its prevalence here.

Madam Kwek, who started a self-service laundromat business last year, said: "Parents need to tell themselves, even when the world doesn't believe, that you have to believe.

"You must first believe before you will have the courage to try. If you already give up, that's very sad."

Speaking to The New Paper in a phone interview, Madam Kwek said that as a newborn, Jarene had to fight for her life.

"She kept vomiting and she can't swallow so she choked. She would turn blue," Madam Kwek recalled.

"I was constantly searching for a diagnosis, but I couldn't find any. None of the doctors could confidently say 'This is it'. They treated (my daughter) symptomatically."

Jarene was initially diagnosed with central hypotonia, a condition resulting in low muscle tone that is caused by brain defects.

She failed her first hearing test and doctors were not sure if she could even see, so the prognosis was bleak.

"They didn't know what she could do," said Madam Kwek.
It was only when she was 6½ years old that doctors diagnosed it as Moebius Syndrome.
"My girl's smart, she can read and understand things. But the muscles in her face and throat are affected," said Madam Kwek.

As Jarene cannot swallow, she had to be tube-fed from birth.
"She can't blow the candles off a birthday cake. These are the things we tend to take for granted," said Madam Kwek.

Madam Kwek edits Special Seeds, an e-zine for caregivers of persons with disabilities and special needs.

 

Today, Jarene cannot swallow, but she has learnt to swim. She can also speak, although what she says is unclear to most people.

She goes to the Cerebral Palsy Alliance Singapore (CPAS), which offers an academic programme that prepares children for the PSLE.

STAYING POSITIVE: Madam Sally Kwek and her daughter Jarene, who suffers from a neurological disorder called Moebius Syndrome. PHOTO COURTESY OF SALLY KWEK

"When my parents saw my child take a crayon to write her name, it was a mindset change for them," said Madam Kwek.

She hopes Jarene will grow up in an environment with greater access to services for her, whether it is education or common spaces without harassment.

She added: "We shouldn't be put on a pedestal, but we shouldn't be treated like another species too."

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