AUTISM UPDATE
We do autism updates here occasionally because at times--though by no means always--Moebius Syndrome is associated with autism.  Children with Moebius Syndrome may sometimes be autistic as well.  New research goes on in the world of autism all the time--now, they're even using robots--check it out:

Zeno has empathetic eyes in a beautiful hazel hue and can walk and gesture with two hands. His lifelike skin is called Frubber and allows his face to smile, frown, and look inquisitive. But he doesn’t make judgments.
Zeno is a 2-foot-tall robot, and researchers believe he may be able to recognize autism in infants and toddlers before traditional diagnoses that rely on speech and social interactions.
UT Arlington scientists have teamed with colleagues at the University of North Texas Health Science Center, the Dallas Autism Treatment Center, Texas Instruments, and Hanson Robotics in Plano to rework Zeno and other lifelike robots to diagnose and treat children suffering from autism spectrum disorders. The robot would not only interact with the children but would measure their movement and indicate what therapies work best.
“It’s more than just seeing how autistic children react when interacting with the robot,” says electrical engineering Associate Professor Dan Popa, principal investigator of the project, which is funded in part by a grant from the Texas Medical Research Collaborative. “Eventually, we want to customize the robot to better fit individual needs of children with autism.”
Carolyn Garver, director of the Dallas Autism Treatment Center, says the earlier the disorder is identified, the sooner it can be treated.
“Children with autism are intrigued by the robot. Robots are nonjudgmental. Sometimes autistic children just shut down with human interaction,” says Garver, who notes that one in every 88 children will have an autism spectrum disorder.

“If we can document that a certain eye gaze or motor movement means some level of autism, this could help in developing ways to treat it early on.”

She believes the best possible outcome of the research would be to identify biomarkers though a child’s movement to aid in diagnoses.
“There really are no biological methods of determining autism. Right now we just observe. If we can document that a certain eye gaze or motor movement means some level of autism, this could help in developing ways to treat it early on.”
Nicoleta Bugnariu, an associate professor at the UNT Health Science Center and a physical therapist/neuroscientist, is most interested in motor control issues.
“How these children keep their balance, reach for an object, and move about a room may be extremely important in diagnosing autism,” she says. “If we can detect these motor biomarkers and determine the timing of these differences during the developmental process, that would be of great benefit for diagnosis and treatment.”
Autism is typically diagnosed based on deficiencies in social interaction and speech problems. But with infants or toddlers, an emphasis on motion could aid early detection.
“In the first two years of life, language is a small part of a person,” Dr. Bugnariu says. “Children move first, then speech comes. We can’t wait until they use speech. We need to determine sooner who has autism.”
Dr. Popa, who directs the Next Generation Systems group at the UT Arlington Research Institute, focuses on developing robots that are smaller, less expensive, and more intelligent, agile, and networked than those on the market today. Hanson Robotics sought his help to make the robots more human and take them from the lab to the home. Hanson provided the initial robot, and Popa’s team embedded a more performance-controlled system into it.
“That way you can adapt the robot behavior to do anything you want,” he says.
Popa, who has worked with Hanson since 2005, says responsive cameras similar to the technology in game systems like Microsoft’s Xbox Kinect could be placed in Zeno’s eyes. Such vision tools would record a child’s movements and mimic behavior. Hardware based on Texas Instruments chips and cameras could be used to fashion a control and perception system to record movement.
“We believe the research will lead to a better life for the child with autism,” he says.

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"It's seizing the day and accepting responsibility for your future.  It's seeing what other people don't see, and pursuing that vision no matter who tells you not to."--Howard Schultz

INSPIRATIONAL STORY OF THE DAY
Meet a young man who has another rare condition.  It's called "phocomelia", and thus he too has serious physical differences.  But again--it hasn't slowed him down.  He's a real prodigy at the piano, and he's inspires others greatly--read more about it; his name is Landon Weeks:

Editor's note: In the Human Factor, we profile survivors who have overcome the odds. Confronting a life obstacle -- injury, illness or other hardship -- they tapped their inner strength and found resilience they didn't know they possessed. This week we meet Landon Weeks, 17, who was born with a congenital birth defect called phocomelia, which causes limbs to be so short that hands and feet are very close to the body. Weeks' upper extremities are affected, but he hasn't let it slow him down.

(CNN) -- February 29 is a birthday that suits me well. It is a unique day, and I am an original young man.

I have never met anyone with upper extremities like me. I have seen others with variations of my condition, but my arms seem to be different from any others that I have seen.

My physical differences from other people are obvious. As long as I can remember, I have been unable to avoid the stares of strangers who see me for the first time.

I have had a great time joking with young children who are fascinated with my appearance. They can't resist innocent questions about the location of my arms. I have made up stories about my arms being eaten by sharks or being abducted by aliens.

As a young child, I had difficulty crawling, and so I learned to move by scooting across the floor in a seated position. Once I started walking, my parents worried about me because every time I fell, I would hit my forehead on the ground. They quickly remedied this problem by finding a protective helmet for me to wear as I would run around. I remember wearing this helmet at every recess period throughout my early school years.

At times, my physical problems have discouraged me, but in retrospect, I am grateful for this challenge. I have found that throughout my life, so many people have been kind, generous and sweet to me. Many people have gone out of their way to help and encourage me, and many opportunities have come to me as a result of my differences.

I have been taught and loved by countless teachers, friends, neighbors, church members and scout leaders. I believe that God has given all of us challenges to overcome, and mine are just more visible than the trials faced by others. I also believe that along with weaknesses and challenges, God also blesses us with talents.

I have had a supportive family that has treated me with love and reassurance. They have helped me develop my talents.

I have learned to do things that seemed impossible. I have excellent penmanship. I have played competitive soccer and basketball. I can dribble, shoot three-pointers and scuba dive. I can ride a recumbent bicycle, and I am an excellent driver (except for running into a snowbank after a winter storm this year.)

Following the example of my brothers, I became an Eagle Scout, and then, after persevering for many years, I earned every merit badge offered by the Boy Scouts of America.

I have been enamored with the study of music. At age 11, I was determined to learn to play the piano like my brothers. I was led to a wonderful piano teacher who had been a concert pianist but was involved in an accident that left her partially paralyzed and able to play with only two fingers. She recognized my potential talent and continues to encourage me.

I recently realized that I also have a vocal talent and have completely enjoyed participating in many community, church and school choirs. I have had many outstanding choir directors who have given me opportunities to excel. I was even able to sing and dance in my school's "High School Musical" production.

Sharing my musical talent with others has been an amazing experience for me. I love to perform, and I am grateful to find many who enjoy listening to my music. I am hopeful that I can continue to develop my talents and that with God's help, I can reach my potential and will be able to inspire others to achieve their dreams.

 

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"And the day came when the risk to remain tight in a bud was more painful than the risk it took to blossom."--Anais Nin

SOME RANDOM THOUGHTS ON THE "SMILE SURGERY"
This issue came up a bit on Facebook the other day, and it got me thinking about it.  Here are just some random thoughts I have about it, in no particular order:

1.  I think of course that if a person with Moebius wants the smile surgery, that's great; and if he/she has it and it's successful, of course, who wouldn't be thrilled about that.  After all, it's only natural to want to smile, to have that ability to express yourself in that way.

2.  At the same time, if one does not wish to have the surgery, that's fine too.  And many adults with Moebius make that choice.  Hey, we are who we are.  We're used to not smiling.  We know how to deal with it.  Why go under the knife?  We're comfortable with who we are.

3.  It is only natural and right for parents of children with Moebius Syndrome to want to look into the smile surgery.  What's it all about? Would my child be a candidate for it?  After all, you want to know all your options.

4.  At the same time, I tend to agree with those who would argue this:  that parents of Moebius children should not feel that their children MUST undergo the smile surgery.  Children with Moebius are indeed beautiful.  They smile from their hearts and they teach us many things every day.  We should not in any way put out the notion that somehow a child--or any individual--is in any way "defective" without the ability to smile.  To us, it shouldn't matter.  Our Moebius children are beautiful from the get-go.  And if we want society to accept us as we are--and we do--then we must accept us as we are, too.  So in my opinion--and this is just my opinion, everyone has to decide these things for themselves--there need be no rush into smile surgery.  And don't let society pressure you into it.  Only do it for the right reasons.

For no matter what, our smiles come from our hearts.

SOME NEWS FROM AROUND THE NATION
Encouraging news, actually---a big software company has established a program to focus on hiring those with autism:

A leading software company, with offices in the United States and around the globe, is launching a strategic effort to hire people with autism in order to tap their unique talents.

The Germany-based software giant SAP said that it will recruit individuals with the developmental disorder for jobs as software testers, programmers and data quality assurance specialists.

“SAP sees a potential competitive advantage to leveraging the unique talents of people with autism, while also helping them to secure meaningful employment,” the company said in a statement.

Already, SAP conducted a pilot program in India with six workers on the spectrum employed as software testers, which the company said resulted in improved productivity. A similar pilot is underway in Ireland and plans are in the works for the employment effort to expand to the United States, Canada and Germany this year.

SAP said it is partnering with Specialisterne — a Danish organization that specializes in helping people with autism apply their talents to work in the technology field — to incorporate the new hires into their business.

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"You must never be fearful about what you are doing when it is right."--Rosa Parks

MOEBIIUS SYNDROME IN THE NEWS
Hey, we're back after a couple of days off...and we return to read about one of our newest Moebius heroes:  young Preston Tassi and his family, from Des Moines, Iowa.  Preston's parents hope to be able to have their son undergo the smile surgery.  But it's not going to be easy to make it happen.  Want to know what it can be like to be a mom or dad of a Moebius child?  Never heard of the smile surgery, or want to know more about it?  Read on:

A one-year-old whose face is paralyzed due to an extremely rare neurological condition is set to undergo groundbreaking surgery that will see him smile for the first time.
Preston Tassi from Des Moines, Iowa, is one of several thousand people worldwide who suffers from Moebius Syndrome, which means he cannot blink, look side-to-side or move his mouth.
However, doctors told KCCI.com that they are planning to treat his debilitating symptoms through a special procedure that will insert nerve and muscle tissue from his inner thigh into the jaw area.
Preston's parents are now desperately trying to raise the $100,000 needed for the operation, often referred to as smile or reanimation surgery, which will take place when he turns five.
Sarah Tassi said she and her husband, Jason first realized something was wrong shortly after Preston's birth on May 18, 2012.
While ultrasounds had not detected anything unusual, they were surprised to see that he only had one finger on his right hand.
Nurses were also concerned that he was breathing oddly and his eyes stayed wide open while he cried.
After doctors assessed the newborn's condition, Mr and Mrs Tassi were called in to meet with a neurologist. An MRI scan confirmed that Preston had Moebius Syndrome.
The incurable birth disorder prevents the cranial nerves around the brain from developing, resulting in an inability to move the eyes and face. In some cases it also impacts hearing.

'Just because someone may not smile on the outside, doesn't always mean they're not smiling on the inside'

 

Other indicators include clubbed feet, missing digits and breathing difficulties. It is thought to affect roughly two to 20 births in every one million and a 2007 study identified 2,000 cases globally.
Since birth Preston has been going to weekly physical therapy sessions, but to restore control of his lips and tongue surgical intervention will be needed. Mrs Tassi says that at the moment he is unable to eat unaided.
'As we feed him we have to hold his cheeks in,' she explained. On the flip side Preston's motor skills are on track with other children his age and he is almost ready to walk.
In a bid to raise the thousands of dollars needed for surgery the Tassis have moved back in with their parents and set up a website called smilesforpreston.com.
On their site they write: 'Preston is a remarkable little boy. Nothing is going to stand in his way. And we hope that sharing our story (his story), it will raise more awareness for others with this very rare syndrome.
'And for others to realize you can't always judge a book by it's cover. Just because someone may not smile on the outside... doesn't always mean they're not smiling on the inside.'
Dr Nate Noble, Preston's doctor at Blank Children's Hospital, says his case will help professionals to better understand Moebius syndrome.
Despite the challenges they have faced as new parents, Mr Tassi added: 'We just feel blessed to have him in our lives. Every second of it.'


Amen.  Be sure and go to the original link above for this story--there are some great pictures there of brave Preston and his family.  Best of luck to them.

THE ABERCROMBIE AND FITCH CONTROVERSY
One of my friends on Facebook was talking about this in the last couple of days, but I hadn't heard anything about it.  So I did a little looking around.  Here first of all is the genesis of the controversy:

Abercrombie & Fitch Chief Executive Michael S. Jeffries has finally addressed criticism regarding controversial comments he made during a 2006 interview that have resurfaced and gone viral over the last week.
The clothing retailer has avoided commenting on the issue. But anger continues to mount online against Jeffries and Abercrombie, particularly its strategy of not making women’s clothing in any size above large.
In a statement issued Thursday, Jeffries falls short of an apology, instead saying he regrets that his “choice of words was interpreted in a manner that has caused offense.”
At issue is an interview that Jeffries, 68, had with Salon magazine in 2006 in which he described Abercrombie’s target market.
“In every school there are the cool and popular kids, and then there are the not-so-cool kids,” Jeffries said in the article. “Candidly, we go after the cool kids. We go after the attractive all-American kid with a great attitude and a lot of friends. A lot of people don’t belong [in our clothes], and they can’t belong. Are we exclusionary? Absolutely.”
Since the interview resurfaced, a petition popped up on Change.org last week to pressure the company to change that policy. Then, a Huffington Post blogger posted an open letter to Jeffries. A YouTube video appeared this week in which a man distributed the company’s clothes to homeless people on Los Angeles' skid row to change the brand's image.
In his statement, Jeffries said his “7-year-old, resurrected quote has been taken out of context,” but he reemphasized that Abercrombie “targets its marketing at a particular segment of customers.”
He added: “We are completely opposed to any discrimination, bullying, derogatory characterizations or other anti-social behavior based on race, gender, body type or other individual characteristics." 

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Okay?  And yes, of course, A & F has the right to market its stuff to whomever it wants.  That's part of the freedom we all enjoy.  And its CEO can say whatever he wants about that.  That's part of freedom, too.  But...at the same time, we can wish, can't we, that he had considered the consequences and the import of his words and attitudes on the wider culture.  And I think we all wish that he'd think about it some more.  For his words and actions can in fact appear to condone, and even encourage, exclusionary thinking--and actions--in many ways.  And this is explained very well by a young lady who recently wrote an open letter about this whole topic.  Check it out:

Abercrombie & Fitch's exclusion of large women hit close to home for Philadelphia-based writer Colleen Radano.
Radano sent us a letter about how she was bullied by kids who wore Abercrombie in high school.
Abercrombie has been in the hot seat since Business Insider connected CEO Michael Jeffries' comments about wanting beautiful people to shop there to the company's exclusion of clothing sizes for large women.
Abercrombie is standing by its exclusion of large women, even after public protests about the CEO's attitude. 
We published an abridged version of Radano's letter. Read the whole thing here.

A Note to Michael Jeffries, CEO, Abercrombie & Fitch.

Mike,

I write to you in response to the recent media outburst surrounding your unfortunate decision to further declare the exclusions that exist in your soft-core porn clothing store, Abercrombie & Fitch. I read your statements, your comments, your beliefs and I’ve let them sink in for a few weeks. In fact, I initially decided not to respond at all since I have always chosen to not shop at your store anyway. The fact that your store doesn’t make or sell clothing higher than a size 10 or a “L” is actually news to me. I think your store, quite literally, stinks.

Now, I worked at Guest Services inside of my local mall and I had to deal with the customers who complained about the abundance of musky stench that infects the sinuses of each passer-by, but I did not write you then. I heard that you were targeting girls as young as eight years old in your campaigns over the years, sending them your pornographic catalogs and full-knowingly attempting to engage them into becoming sexual, “cool” teens who would shop at your store, but I did not write you then. But when you specifically called out my plus size ass in your latest statements, Mike, I’m ready to write.

You see, I told you, I’m polite to the point where it makes me uncomfortable to just call you “Mike” (but I’m over it). I know I’m polite because I’ve met impolite people (this is you). I think back to high school, where I attended a “well-off” private, Catholic, college preparatory school. I think of the kids who, when they weren’t wearing a uniform, sported your clothing. I regret to inform you that “cool” doesn’t exactly come to mind, but “expulsion”, “bully”, “pretzel thrown at me at lunch”, and “harassment” actually do. They were ALL on the football team and I bet you, Mike, find them to be cool. 

You see, it was the kids wearing your clothing who thought they were so unstoppably “cool” (because you told them they are) that they could therefore harass girls all throughout our class-- girls of all different shapes and sizes. They thought they could write derogatory comments across one girl’s driveway at home, and they were expelled. They thought that they could call the girls at home at night, plaguing them with hurtful words and hysterical laughter, and they were suspended. 

I’m 27 years old, Mike, and I received a social media message from one of these bullies just last year, with a wink face… that’s it, just a wink face. It was a cruel reminder, a hurtful flashback.. a wink is all it takes to tell me, almost TEN YEARS after high-school graduation and the last time we saw each other, that he still is teasing me, he is still mean, he is still a bully, he is still SO COOL, and he wanted me to know.

When I re-visited your outrageous commentary today, I discovered the long list of rules that you require that your private jet flight attendants fulfill.

I can’t say I won’t buy your products because, as I’ve said, I never did and, secondly, you’ve excluded me from being able to do so anyway. I know there is currently a young all-American man who is clothing the homeless by donating his A&F clothes because your claims sicken him too, Mike. I know there are a bunch of moms, fully disregarding the former money spent on your clothing, rallying up mounds of their kids’ clothes that display your A&F tags, and ridding of them. 

And I’ve got news for you, Mike… in the world, girls with huge hooters are INCREDIBLY cool, and they may require an “XL”.

Get with it,

Colleen Radano.

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You go, Ms. Radano.

MAKING FACES
...is an outstanding non-profit organization based in Canada that has as its mission helping children with facial differences.  Look at some of the great work they're doing:

Michael Williams-Stark can remember at a young age his mother holding him up in front of the medicine cabinet mirror and explaining to him how he was different.

She would point to the facial differences resulting from his cleft lip and pallet: the scars above his lip and slightly asymmetrical nose.

“But she did it in a way that made me feel unique and special,” Stark said.

Not everyone was as loving as his mother, however, and growing up with a facial difference wasn’t easy. There was teasing and name calling, insecurity and emotional repercussions from having a face that others labeled as different.

“I think for a while I was a pretty tough, hard-to-get-to guy, or at least I tried to be,” he said. “I didn’t like people that much, they were just instruments of cruelty.”

Now in his 50s, Stark, who lives in South Parkdale, sees his facial difference as a gift.

“I will always see the world through the eyes of that little boy, but at the same time I think it makes the successes all the sweeter because you know what you have gone through to get there.”

It made him empathetic, gave him the drive to chase down his dreams in music, acting, voice work and most importantly creating an avenue to help children and youth living with facial differences of their own.

Stark is the founder of Making Faces, a non-profit organization that helps children with facial differences. He has created a series of improvisational workshops specifically designed for children with facial differences that teach them acting skills and improv games to both build confidence and develop important life skills.

Improve comedy is the perfect way to help because it addresses skills people with facial differences sometimes lack, he said.

“We hate to make eye contact...and we don’t like to use our voices often,” Stark said. “You can’t get through an improve sketch without speaking or making eye contact with the other actors.”

Eighty percent of the youth he works with have a cleft lip and/or pallet; the remainder are young people who are born with or acquire a facial difference through an accident. Stark also does workshops with speech pathologists, social workers and teachers.

“I just don’t want them to be as lonely or isolated as I was,” he said. “I can’t take care of all that, obviously, but I can help give them the tools to be more independent and assertive with what they want.”

Participants practice eye contact, voice projection, public speaking and creative storytelling and are encouraged to use their voices and express themselves in a fun, creative and safe environment.

The workshops also offer the opportunity for children to meet other children with facial differences and provide a safe, caring environment where they can discuss differences, teasing and related issues, which Stark knows all too well.

Stark was born in 1955 in British Columbia with the worst bilateral cleft lip and pallet case doctors had seen up to that point .

He had more than a dozen surgeries to repair the pallet, reconstructive facial surgeries, bone graphs, a deviated septum rebuilt and more.

In spite of that, Stark ended up majoring in theatre at Douglas College in New Westminster, B.C., and becoming a voice-over actor and a musician.

“Not that I am particularly brave or anything, those were just the things I was interested in and I realized early on that these are the cards I have been dealt, so if I am going to live a fulfilled life I’m going to have to suck it up.”

He moved to Toronto in 1984 and started creating character voices, which were featured, on the ‘Super Mario Brothers’ and ‘Beetlejuice’ cartoons, among others.

“But I never dealt with my facial difference at all, I never talked about it,” he said.

Back in the mid-1990s, while watching a documentary on facial differences with a friend, she suggested Stark should be working with children.

“She said, “Don’t you think you should be working with kids like that? Wouldn’t it have meant a lot to you when you were a kid to meet an adult like you?,” Stark recalled.

He found it sage advice, and started doing workshops using acting, theatre and improv games with About Face, a North York organization that promotes and enhances the emotional and mental well-being of individuals with facial differences.

“They were such a hit that I was asked to come to SickKids and teach there,” Stark said. He did workshops at the hospital for five or six years before deciding to apply for charitable status for Making Faces in 2004.

There is no charge for the workshops and Stark said his dream is that Making Faces will either find government backing or a sponsor to help him focus on the charity and ensure it goes on after he isn’t able to do it anymore.

He said he is looking at getting a space to host regular weekly workshops and start leadership training so his older students can learn to teach workshops.

“I would just like to see this thing take off and kids like us get some encouragement and support,” Stark said.

Stark said there is a new Making Faces executive director and they are looking at launching new programming this summer.

He also hopes Making Faces will be able to travel to the places he has been asked to go such as across Canada, into the United States as well as Indonesia and the Philippines."

"Sometimes our light goes out but is blown into flame by another human being.  Each of us owes deepest thanks to those who have rekindled this light."--Albert Schweitzer

MOEBIUS SYNDROME IN THE NEWS
Read about 13 year old Tessa Kremer, who has Moebius--but hasn't let it stop her:

Brandon Twp.- Tessa Kremer was born with Moebius Syndrome, a rare neurological disorder that affects cranial nerves and can cause other physical problems.

The disorder has created challenges for the 13-year-old, but it has also created a greater sense of empathy for others. As a middle school student, in an environment where children are often bullied for weaknesses or being different, Tessa has shown great strength of character by reaching out in kindness to help a fellow student with special needs of her own.

"Tessa is a child that has had to have a lot of help throughout her life because she has a disability," said Karen Cosgrove, a Brandon Schools occupational therapist who nominated Tessa for a youth recognition award. "She's only 13 and she is already giving back, already reaching out to not only become friends with a student disabled in a different way, but she is so kind when she does it. She reaches out in such a kind, wonderful manner, it's an asset to her and the way she was raised. Nowadays, especially now in middle school and high school and with bullying, she comes every day with a positive attitude and that is a testament to her, because it has to be hard… Kids complain about things and whine about things that are hard, but she is a hard worker and always keeps a really positive attitude."

Tessa was presented a Gold Star Award, a special honor for her actions at the Brandon Groveland Youth Assistance Youth Recognition Night April 25.

"I was surprised to get (the award)," said Tessa. "I have overcome my challenges and help others… I like helping, I feel happy to do it."

Youth Recognition Night honors school-age residents within the Brandon School District boundaries nominated for awards on the basis of voluntary services and/or exceptional personal efforts. Categories include exceptional service to others; achievement by an individual who has overcome personal challenges and/or set an example for others; heroism/outstanding humanitarian act; and exceptional act by an individual within a club or organization.

This year, 140 children and teens were honored and Tessa was one of five kids who received a Gold Star Award, extra recognition for a job well done.

Fran Hotchkiss, chairperson for the event, said about 300 people attended Youth Recognition Night at the Brandon High School cafeteria.

"It was outstanding," she said. "This year, there were many people who nominated the kids on hand to present the awards. It was so great to see the high rate of wonderful young people in our community that volunteer."

Youth recognition nominees have included students who have helped their fellow classmates, participated in the Peers Making Peace mediation program, organized fundraisers to help various charities, donated their hair to cancer patients through Locks of Love, helped out during library programs, assisted senior citizens with yard clean-up and minor home repairs in the Teens and Seniors Rocking and Raking, gone on mission trips to other states or within Michigan, and various other volunteer activities."

"Have the courage to say no.  Have the courage to face the truth.   Do the right thing because it is right.  These are the magic keys to living your life with integrity."--R. Clement Stone

BOOK TALK (continued)

Well.  So today I finished "Eleanor and Park."  Wow--what an intense, excellent read.  I promise I won't give away the ending.  But here are some good insights to take away from it, for those of us interested in the issues pursued in this blog:

1] Both Eleanor and Park are in high school.  They're both in various ways seen as "different."  They are not with the "in" crowd.  (persons with Moebius Syndrome who've been to high school know the feeling.)  But what the book shows is true--even if you're seen as different, it doesn't mean there isn't someone out there for you.  There can be.  Maybe it's someone else who is different--you would find you share a lot in common.

2] Again--teasing...well, no, really it's bullying--hurts.  People should never write it off as simply a rite of passage, that everyone does it or goes through it and therefore it's no big deal.  It can be.  And don't just tell someone to ignore it.

3] There was one character in the book--her name was Tina--who actually was quite interesting.  At first she appears to be a sort of stock character you'd expect to find in a book like this.  She's good-looking; she's popular.  And she absolutely torments Eleanor, the "different" girl, in so many ways.  But later on, when Eleanor is in trouble and needs help, it becomes clear--Tina doesn't really hate her.  She's concerned for her and helps her some.  That's probably something to remember--there's good in anyone;  the person who teases you isn't really filled up with hate (though sometimes it's hard to remember that.)

Still, I think it's also good to remember--even when the Tinas of the world do something good, don't forget--that doesn't excuse their bullying or somehow make it okay.

4] Love stories sure can make for good novels, hmmm?

5] The book's ending will leave a lot open for your imagination.  And that's a great thing about this book.

Read "Eleanor and Park."  You'll be glad you did.

BOOK TALK

Today I just want to encourage everyone:  there's a great book out there.  My wife, Lisa, the librarian, turned me on to it.  She always seems to find the best books--I guess that's why she's so good at what she does. :+)  Anyway, it's called "Eleanor and Park."  Just trust me--read it.  And read it especially if you're a Moebius mom or dad, who's worried about what it might be like for your kids once they get to those teen years; what will it be like for them, once they're kind of an outsider, seen as "different", etc.  Here's a description of it from Amazon:

"While Eleanor & Park is technically classified as YA lit and has a cutesy cover, don’t let the stigma of “books for teens” fool or deter you. It is written about teens, sure, but the themes are so universal that anyone who survived high school will relate to the lives of the two protagonists. Eleanor is the new girl in town and her wild red hair and patchwork outfits are not helping her blend in. She ends up sitting next to Park on the bus, whose tendencies towards comic books don’t jibe with the rest of his family’s love of sports. They sit in awkward silence every day until Park notices that Eleanor is reading his comics over his shoulder; he begins to slide them closer to her side of the seat and thus begins their love story. Their relationship grows gradually--making each other mixed tapes (it is 1986 after all) and discussing X-Men characters--until they both find themselves looking forward to the bus ride more than any other part of the day. Things aren’t easy: Eleanor is bullied at school and then goes home to a threatening family situation; Park’s parents do not approve of Eleanor’s awkward ways. Ultimately, though, this is a book about two people who just really, really like each other and who believe that they can overcome any obstacle standing in the way of their happiness. It’s a gem of a book."

"Become a possibilitarian.  No matter how dark things seem to be or actually are, raise your sights and see possibilities--always see them, for they're always there."--Norman Vincent Peale

FINALLY...
...as I mentioned today on Facebook as well, I can finally kind of poke my head out of my metaphorical hole and look around.  I've been busy grading final exams and doing final grades for all the classes I teach for the past week, so it's been hard to do anything else besides that.

But finally today it's all done.  And I guess, in thinking about this today, it led me in a familiar direction, but still one worth stressing again.  Which is:  the good thing that so many of us adults with Moebius have is simple:  we're not simply just about Moebius.  (although that is certainly an important part of our lives)  Rather, we have lives outside of Moebius.  We have real jobs.  We have marriages, children, lives.  Sometimes I can't even do this blog quite as often as I'd like to, simply because I'm so busy with teaching, grading, and family responsibilities.  And of course that's the way it goes sometimes, and I know all of you out there understand.

But for all of you Moebius moms and dads out there--for all of you who have children with Moebius Syndrome--look at it this way:  this is a good thing.  Because all of you maybe worry a little about your kids, right?  What will happen to them when they grow up?  Well--if you support them, and try to show them the way to be independent, then they too will have lives.  They'll have jobs, and relationships, and all the rest.  At times they will be very busy.  At times they will be stressed.  But they'll also have the joy of...well, living life. 

We adults with Moebius are real people, who have to go through a lot of the same things that those who DON'T have Moebius have to go through.  But you know what?  We wouldn't have it any other way.

A STAR OPENS UP ABOUT HIS MEDICAL CONDITION
Because, really, that is what this is.  It's always good when famous folks do this.  Physical differences, unique medical conditions--they can happen to anyone.  As all of us with Moebius Syndrome know.  Read on--about Lil Wayne:

There's a reason Weezy feels woozy sometimes.
In an interview on Wednesday's episode of MTV's RapFix Live, Lil Wayne opened up about his ongoing battle with epilepsy, which he said causes recurring seizures that can strike unprovoked and at any time.
"No warning, no nothing, I don't feel sick. I get headaches real bad. And the headaches? I didn't get no headaches or nothing," the rapper told MTV News correspondent Sway Calloway.
Related: Rapper Lil Wayne reveals he's epileptic
According to Lil Wayne, he has no memory of the seizures when they happen, either, and is usually told about them afterward by family and friends.
"I told them the other day, 'Y'all can tell me right now that y'all was lying, like, 'You know what? We lyin' ain't nothin,' and I'd have to believe them because I don't know," admitted the MC. "I go to sleep and wake up in the hospital. I don't feel anything. I just hope it stops happening."
The 30-year-old Wayne (real name: Dwayne Michael Carter Jr.) has experienced several scary episodes over the last few months, prompting concerns about his health.
Related: Lil Wayne tweets "I'm fine" after recent hospitalization for seizure
The hitmaker was hospitalized in the ICU of Los Angeles' Cedars-Sinai Medical Center for six days following multiple seizures. He subsequently recovered only to be felled by another seizure on April 30 that landed him in the hospital again.
On both occasions, Lil Wayne took to Twitter to let fans know that he was OK and thank them for their prayers. He also told L.A.'s Power 106 in March that he's an epileptic and prone to seizures, but "y'all just never hear about it."
Either way, the TMCMB artist isn't letting the ailment slow him down any. Yesterday, he was in Miami to celebrate the release of his new shoe line, Spectre by SUPRA, and noted his doctor is cool with his activities.
Related: Lil Wayne hospitalized for multiple seizures; rapper's pals tweets he's alive and well
"He didn't tell me to do too much that a human doesn't do anyway. Sleep and eat right, that's about it," said Wayne."

MOMS:  WHAT STRESSES YOU OUT THE MOST?
Are you a mom who also happens to have Moebius Syndrome?  Are you a mom of a child who has Moebius?  But then, this applies to all moms--you all have stress, and feel it.  There are many things that stress you out--and many of them are legitimately stressful things.  And yet--do moms sometimes do it to themselves???  That's what this piece asks, and it's really the kind of thing we should all examine ourselves about, really.  Read on:

Moms, we are our own worst enemies.
We worry about what our kids eat, how they behave, and whether they study enough, socialize normally and live healthfully. And while we're at it, we worry about ourselves and whether we're good enough at home, work, our kids' schools and everywhere. On top of it all, we worry about what others think of us. Oh and we also worry about being too worried.
When it comes to the pressure we feel to be perfect, we are doing it to ourselves, found our exclusive TODAYMoms.com survey, released this week, of more than 7,000 U.S. mothers. A full 75 percent of the moms surveyed say that the pressure they put on themselves to be perfect is worse than the pressure they feel from other moms. And nearly as many moms, about 72 percent, admitted they stress about being stressed.
So why are we doing this to ourselves and how do we stop? Many moms agree that to achieve less stress, we must take baby steps, and realize that perfection shouldn't be the goal; being as good a mom as you can be is good enough.
Maria Bailey, founder of Mom TV and host of Mom Talk Radio, and a mother of four kids ages 14 to 19, says part of the problem of trying to be a perfect mom is that there is no one definition of perfection.
“My definition of balance is not your definition of balance,” says Bailey, of Pomano Beach, Fla. “Where moms get in trouble is that they let other moms define perfect.”
Bailey says when her kids were younger, she spent lots of time traveling for her career and worrying about how to compensate for being gone so much. “I’ve never been one of those moms who did it all…so I picked two areas – Career Day at school and planning elaborate birthday parties -- and that was my thing.”
Yet, even then, stress was ever-present. Her epiphany came at 3:30 a.m. one morning, when she was angry at herself for staying up making invitations and sewing 50 burlap party favor bags for a Robin Hood-themed party.
“I was stressed out and hating it, until it dawned on me… wait, I like this. No one made me make these. I took a step back and realized I like to be alone in the quiet and craft,” she said. “Once I owned it, the stress dissolved to enjoyment.”
In our TODAY Moms survey, we asked moms to pick the top three sources of stress in their lives and 60 percent of moms answered, “the lack of time to do everything that needs to get done,” while 41 percent said, “having to juggle so much between family and work.” Another 35 percent blamed the financial strain of raising kids.

For Jacqui Boland, CEO and founder of RedTricycle.com, a digital city guide for parents, the working mom juggling act brings on the most stress.
“The things that stress me out the most as a working mom are forgetting my son's lunch or 'share' item for show and tell. I know it can just as easily happen with moms who don't work, but I always seem to blame it on my hectic work schedule,” says Boland, of Larkspur, Calif., whose son Jamie is 6. “Also, it seems like board meetings and school concerts always fall on the same day, and having to decide between the two is so stressful,” she says, adding that “my son doesn’t always win.”
For Glennon Doyle Melton, mom to kids ages 10, 7 and 5, even something as simple as playing with her kids can trigger stress. “I feel guilty not being on the floor for hours every day playing with my kids,” said the Naples, Fla., mom blogger at Momastery.com and author of "Carry On, Warrior: Thoughts on Life Unarmed."
Her own mother provides perspective, she says.
“When I tell my mom that, she just laughs. The problem is not that we have problems, because every person has specific challenges. It's this idea that we're not supposed to have problems,” says Melton. “We have this ideal family in our heads and we spend all this time trying to get to something that's not real. We have to lower our expectations.”
While the prevalence of stress in moms’ lives was a harsh reality revealed in the TODAY Moms survey, there was some good news, and that’s that the stress to be Supermom eases as our children grow. The survey found that moms of teens are half as likely to report stress about being the perfect mom as moms of toddlers and babies.
Stay-at-home mom Nancye Matheson of Bellevue, Wash., has four kids: a 19-year-old son, twin daughters who are 10 and a 7-year-old son. She says her stress started to ease when she hit a tipping point with her oldest and knew she needed to start letting go.
“I hit a point with my oldest son, where I had invested so much time and energy on being the perfect mom, that I felt confident he had the foundation,” Matheson said. “When he was about 17, I came to the conclusion, he’s got to figure it out. He needs to start making his choices on his own and learning from his mistakes.”
She says having teens and toddlers in the same house is a trip: You stress about grades and college and sex and drugs, while at the same time worrying about the little ones' socialization and emotional growth and making sure they know school is important.
But having her oldest son in college now has helped ease daily stress with her younger ones. She says she puts a lot of energy and time into making sure their meals are balanced, and used to have a rigid nighttime schedule of dinner at 5 p.m., then bath and bed. But with her kids getting more involved in activities, she’s had to become more flexible.
“I allow myself to fall down more,” she says. “I know it’s going to be OK.”
Dr. Janet Taylor, a psychiatrist and TODAY contributor, says that managing stress is all about balance, and most of the time we don’t have enough of it.
“We feel so much pressure not even to verbalize how difficult it can be to be a mother. There are endless demands,” says Taylor, who is a mom of four girls aged 19 to 25. “We can be really harsh on ourselves, and we are groomed not to toot our own horns, so sometimes it's just this negativity that we put on ourselves.”
Taylor isn’t surprised the TODAY Moms survey found that moms of younger kids were harder on themselves. “Look at sleep -- being sleep deprived and still having to maintain a level of professionalism and parenthood is extremely stressful," she said. “Nowadays, people are geographically spread out from their families. New parents are, in many ways, doing it alone, and that's stressful.”
Ultimately, Taylor says, moms can combat stress with a four-letter word: Help. But we just have to ask for it.
“As women, we put on our Superwoman cape and we don't ask for help. We need to ask for what we need,” she says. “The frustration comes when women feel like they have to do it all themselves.”

"I am always doing that which I cannot do, in order that I may learn how to do it."--Pablo Picasso

INSPIRATIONAL STORY OF THE DAY
A teen-aged girl likes music, and can sing.  But she also develops cancer.  Guess what--it doesn't stop her:

Like many aspiring singers on YouTube, 17-year-old Carley Allison has uploaded several videos of herself belting out covers and original songs.

But her most popular YouTube video, which was later posted on CNN iReport, was shot just after doctors sliced a hole in her neck. A golf-ball-sized tumor -- what turned out to be an extremely rare cancer -- was causing her to have difficulty breathing, and she needed an emergency tracheotomy.

Even after the tracheotomy, she could still sing.

"Music has been my passion ever since I was young," the Toronto resident wrote on her blog.

"I started taking guitar lessons when I was 11 years old, and I've been singing for as long as I can remember."

Allison hopes that, despite the tumor, she'll still be able to pursue singing as a career.

The diagnosis

Music wasn't always the primary focus of Allison's life. She initially hoped to become a competitive figure skater, training six days a week for more than five years. The intense training was something she learned from her mother, who was an Olympic marathon runner in 1996.

It was through skating that Allison first suspected something might be wrong. "Her skating coach noticed that just walking up a flight of stairs, she'd breathe hard," said her mother, May Allison. It seemed unusual that such a young athlete might have trouble breathing.

Allison and her family went for a year believing -- as doctors told them -- that she had asthma. But a CT scan in February revealed a malignant melanoma, an extremely rare type of cancer to appear in the throat.

Allison knew her skating career would be put on hold.

A rediscovered passion

Without skating to fill her time, Allison turned her efforts to singing. She has uploaded seven videos to YouTube in the past year, where she has nearly 50,000 views.

"Everything happens for a reason," she said of her condition. "It was an easy switch to put music as the biggest thing in my life right now ... and my music has taken off, which is nice."

In April, her videos received the notice of actress and pop star Selena Gomez. Gomez tweeted, "Carley Allison you are so strong girl. Love you! And praying for you. Keep singing."

The words echo many of the comments on Allison's YouTube and Twitter pages -- and helped her singing videos take off online.

She has certainly followed Gomez's advice, too. Singing is "therapeutic for her in a way," said her mother.

May Allison believes this is the best way her daughter has found to deal with the fact that she has a hole in her trachea and her hair has been shaved down, and it's how she has chosen to express herself.

Her daughter put it this way: "Before February 4, my biggest problem was trying to find a prom dress."

May Allison added, "She wants to make something of (her condition) instead of moping around."

Allison's focus on singing isn't unusual for a patient, said Dr. Michael E. Kupferman of the MD Anderson Cancer Center in Houston. He has seen others with cancer turn to creative outlets.

"Any kind of devastating medical situation will make people more introspective," he explained. "Artists' careers have sometimes evolved having gone through cancer. I've seen patients find that creativity to express themselves whether in music or in art. We've seen that for millennia. It changes the tenor of their art and productivity."

What the future holds

Will Allison still be able to belt out her songs in the same way if her cancer needs to be surgically removed?

Luckily, "her vocal cords are not involved with the tumor," according to her mother.

However, she added, "The one side that the tumor's on, the vocal cord nerve may be affected by the tumor. It's very difficult to tell on the CT scan. We're hoping the chemotherapy will help the situation."

Allison herself maintains a positive attitude.

"There is a smaller chance there may be some permanent damage, but I try not to think about that," she said.

Early on, there were some fears as well.

Allison admitted that she was originally scared by her diagnosis after searching online. She has since mostly stayed away from searching for information on her illness.

When the family learned about the tumor, May Allison said she and her husband got choked up.

"(Carley) turned to us in a calm voice and said she was glad it was her and not anyone else in the family, because she knew she could handle it."

Despite being told there was a 5% chance that chemotherapy would affect a tumor in the trachea, the tumor has become softer since treatment and has moved away from the thyroid gland, which makes it easier to remove surgically.

No matter what happens, Allison still plans to pursue her passions. She's still thinking about a possible singing career, despite the fact that she had to cancel an audition for Boston's Berklee College of Music a few days after she was diagnosed. She looks forward to getting back on the ice one day as well.

It's that unstoppable attitude that has been the most inspirational to witness, her mother said.

"From an early age, Carley always knew what she wanted and had no fear trying to get it," she said.

"For her, every day presents a new opportunity to take a step closer. The interesting thing about Carley is that she actually enjoys the journey as much as achieving her goals. When things don't go according to plan, she rallies quickly and moves on. She has the ability to make anything fun and finds it very difficult to sit still."

"She's been able to touch people," May Allison added. "Her public school raised $5,000 in a fundraiser for (Toronto's) Sick Kids Hospital where she's having her chemotherapy. There are thousands of dollars coming into Princess Margaret Hospital where she has the link on her blog. She's very proud of that."

In the meantime, Allison continues to inspire people on social media with her positive attitude.

"For me to be able to reach out to other people throughout all this has been great," she said. "People want to hear from me and hear my music right now so it keeps me happy. I cherish every moment. I have a different perspective on everything now. In the end, I think it will make me a better person."

"A successful man is one who can lay a firm foundation with the bricks others throw at him."--Sydney Greenberg 

INSPIRATIONAL STORY OF THE DAY
Her son has a rare disease--but there's still hope, and she and others are doing all they can, both for her son and for all rare diseases.  Read all about it:

It was the most devastating news an unsuspecting new parent could ever hear. I couldn't wrap my brain around what the neurologist was telling me.

Finally, I stopped her.

"Is this bad," I asked.

"Yes," she replied.

"So what you're telling me is that my son has a fatal disease?"

"Yes," she said again.

It was like someone had just pushed me off a cliff.

Our son Jonah Weishaar was diagnosed with Sanfilippo Syndrome Type C in May 2010 when he was 22 months old. At the time of his diagnosis, he was asymptomatic, and he still is -- but the clock is ticking.

Our geneticist gave us the best advice she could give in this situation. She told us that this didn't have to be a death sentence for Jonah. With the scientific advancements happening now, treatments that were unimaginable a few years ago are becoming a reality.

This was all we needed to hear. We hit the ground running. A few weeks later, Jonah's Just Begun was formed. The foundation is aimed at curing Sanfilippo Syndrome. We have two goals: To drive the science that will ultimately lead to a cure, and to raise awareness for all rare diseases.

Actor Jonny Lee Miller of the TV show "Elementary" is running a 50-mile ultra-marathon in honor of Jonah's Just Begun. Having him endorse us is a dream come true, and I'll never be able to thank him enough.

We've also formed a consortium of scientists, clinicians and parents all focused on saving our children's lives. We call this consortium HANDS (Helping Advance Neurodegenerative Disease Science). Today, we have four research projects in the works. In the coming weeks we will announce the official Sanfilippo patient registry and a natural history study, which follows a group of people with a disease over time.

Sanfilippo Syndrome is caused by a single gene defect. Because of that defect, an enzyme is not produced. This enzyme's job is to break down heparan sulfate, a long sugar chain. If the heparan sulfate is not broken down, it's stored in every cell, and that causes a cascade of bodily dysfunctions.

First affected is the central nervous system, causing profound brain damage. Also typical is hearing and vision loss, organ damage and bone deformities. Eventually a person dies after becoming unable to eat, walk or talk.

There are four different enzymes responsible for breaking down heparan sulfate: They are designated A, B, C and D. Jonah has Sanfilippo C, which along with D is ultra-rare and occurs in one of 1.4 million births.

Type A (one in 100,000 births) and Type B (one in 200,000 births) are more common and thought to be more severe. Most children with those types don't live past their teenage years.

Type C and D children usually have less severe symptoms. The children suffer brain damage in early elementary school; some live into their mid-20s. Most children succumb to organ failure or upper respiratory infections.

Children appear normal at birth, meeting their milestones. During the preschool years parents start to notice something wrong and the children seem to slow developmentally. Their speech is delayed, in part due to accumulated fluid in the middle ears. They have constant ear and upper respiratory infections, along with diarrhea. The texture of their hair turns kinky and thick. The children are described as having "coarse" features -- protruding foreheads, thick eyebrows, flat noses and full lips.

Next the children start to behave erratically, with hyperactivity, sleep disturbances and compulsions. The skills they have learned fall by the wayside. They are back in diapers, wandering aimlessly. Some stop sleeping for days.

Jonah is 4 years old now, and we've seen no sign of cognitive delay or regression. He does have a speech delay because of fluid in his middle ear, and he is on his third set of tubes. He's constantly congested and has minor bone deformities -- flared ribs and a raised sternum, for example. He goes to preschool full-time and has speech, occupational and physical therapy. He's happy and full of life, a character and the light of our lives.

There are close to 7,000 rare diseases affecting about 25 million people in the United States, according to the National Institutes of Health. About 80% of them are genetic, and it is estimated about half affect children.

Sanfilippo is not complicated like Parkinson's or Alzheimer's, it's just ultra-rare, so the pharmaceutical industry has not taken notice.

Very few federal dollars are allocated for funding rare disease research, and most go toward the diseases with larger patient populations. A disease is considered rare in the United States if fewer than 200,000 people have it. Sanfilippo type C has a known patient population of 16 kids in the United States.

It's left to the parents to lay all the groundwork to de-risk treatments for the drug makers. Our consortium wants to create a patient registry, conduct a natural history study and fund a treatment so we can hand it over to a drug company in hopes a treatment will be created.

Jonah could be the first child to ever walk away from Sanfilippo type C. He's priceless, and just like the thousands of other children affected by a rare and fatal genetic disease, he deserves a chance to live."

"Do not wait to strike till the iron is hot, but make it hot by striking."--William B. Sprague 

PARENTING NEWS DEPT
Hey Moebius moms and dads--you just know that the following goes for you, too; in fact, perhaps even more so for you.  Read on:

A new study from Japan confirms what many mothers may know instinctively: Picking up and carrying a fussy baby usually calms down and relaxes the child, making the move a good one for both moms and infants.
When mothers in the study carried their babies while walking around, the infants became noticeably more relaxed and stopped crying and squirming. The babies' rapidly beating hearts also slowed down, evidence that the children were feeling calmer.
"Infants become calm and relaxed when they are carried by their mother," said study researcher Dr. Kumi Kuroda, who investigates social behavior at the RIKEN Brain Science Institute in Saitama, Japan. The study observed strikingly similar responses in mouse babies.
Since carrying (meaning holding while walking) can help stop an infant from crying, Kuroda said, it can offer mothers a way to soothe short-term irritations to their children, such as scary noises or vaccinations.

Getty Images stock

A new study confirms: Hold that baby as much as you want!

The findings were published online today (April 18) in the journal Current Biology.
A strong calming effectFor the small study, researchers monitored the responses of 12 healthy infants ages 1 month to 6 months. The scientists wanted to discover the most effective way for mothers to calm a crying baby over a 30-second period — simply holding the baby or carrying the infant while walking.

Young babies carried by a walking mother were the most relaxed and soothed, compared with infants whose mothers sat in a chair and held them, the study found. As a mother stood up and started to walk with her child cradled close in her arms, scientists observed an automatic change in the baby's behavior.
These results held even after the researchers took into account other factors, such as the child's age and sex, and the mother's age and walking speed.
Kuroda said she was surprised by the strength of the calming effect from maternal holding and walking. In observing experiments on both humans and mice, she was amazed at how quickly the heart rate slowed, and by how much immediately after a mother started walking. (Mother mice pick up their young by the scruff of their neck with their mouths.)
According to the researchers, maternal walking may be more effective in calming infants than other kinds of rhythmic motion, such as rocking.
Advice for parentsWhen an underlying reason for crying persists, such as hunger or sustained pain, the infant may start crying again soon after the end of carrying.

That's why Kuroda recommended that when a baby starts crying, a brief period of carrying may help parents to identify the cause of the tears. She acknowledged carrying might not completely stop the crying, but it may prevent parents from becoming frustrated by a crying infant.
The findings also have implications for one parenting technique in which parents let babies cry as a way to help them learn to fall asleep by themselves, the researchers said.
"Our study suggests why some babies do not respond well to the 'cry-it-out' parenting method," Kuroda said.
Proponents of the technique advise parents to let infants, after a certain age, cry themselves to sleep — without mom or dad comforting them — in the hopes the baby will learn how to soothe himself or herself.
But Kuroda said that calming by maternal carrying, as well as crying during separation, are both built-in mechanisms for infant survival. These behaviors have been hard-wired for millions of years. "Changing these reactions would be possible as infants are flexible, but it may take time," she said.
Although this study looked at a baby's behavior in response to its mother, Kuroda said the effect is not specific to moms, and any primary caregiver for the infant can perform the carrying. The researchers observed the same carrying-induced calming effects when fathers, grandmothers and an unfamiliar female with caregiving experience carried babies who were under 2 months old, Kuroda said."

"The most exquisite paradox…as soon as you give it all up, you can have it all.  As long as you want power, you can’t have it. The minute you don’t want power, you’ll have more than you ever dreamed possible." -Ram Dass