Monday, March 5, 2012 , by

Sarah Carabott

Dancer offers a way to break out of disability

Known as Jimbo Thinlegz, 25-year old Oliver Scicluna, who suffers from spina bifida, is organizing a break­dancing project which targets the young.

A young man born with spina bifida will next month breakdance his way through common disability misconceptions and help disabled young people find their own dancing beat in a series of workshops.

The feeling of overcoming disability, once you understand it better, is incredible

Known as Jimbo Thinlegz, 25-year old Oliver Scicluna is organising a breakdancing project, called Breaking Limits, which targets children and young persons with a disability.

He will teach breakdancing to young, aspiring performers and focus on how Hip Hop culture has changed his life, helping him adapt to his own body and making him feel comfortable with his own disability.
“When you change the way you look at things, the things you look at, change,” the international performer believes.

“Every person on this planet has the right to live comfortably. These workshops will show that everybody has an artist within himself. They just need to activate it. Breakdancing is a type of free dance, and the most important aspect of it is to be original... so it’s not restrictive in any way,” he adds.

Mr Scicluna has “always wanted to do things”. From a very young age he delved into the world of drama, walked and swam his way through marathons, and some 10 years ago started teaching himself breakdancing.

Just like every other human being, he goes through difficult moments, but whenever he falls, he says, he quickly gets up and keeps walking towards his goals.

His main goal in life is to live for the “fun of it”. Inspiring others comes naturally.
He hopes to use his outlook onlife and his dancing skills to ­“normalise the way a disabled ­person is ­perceived, and the way he perceives himself”.

Malta lags behind other countries when it comes to changing disability perceptions and doing away with misconceptions, he says. The Maltese tend to focus solely on enhancing mobility and not on psychological aspects that would make disabled people “feel comfortable in a more wel­coming mentality”.

“Another thing that disappoints me is the way disabled people are promoted: as if they are always in need and unable to do anything.

“Disability needs to be understood and promoted in a more colourful way. The feeling of overcoming ­disability, once you understand it better, is incredible.”

The young man used to get annoyed when people treated him “so differently”, but he soon realised the issue needed to be ­tackled... and hence the break­dancing project.

At the end of the series of workshops, which he is working on with the help of his friend and rap artiste Jon Mallia from No Bling Show, Mr Scicluna will be accompanied by Dutch performer Redout who to date has no medical explanation about the disability that left him with deformed arms and legs.

Participation in this project, which is supported by the Malta Arts Fund and Inspire, is free of charge.
Those interested can contact Mr Scicluna on breakinglimitsmalta@gmail.com or 7959 3660.

Tanni Grey-Thompson talks about disability: transcript

Baroness Grey-Thompson, Britain's most decorated paralympian, talks to disability campaigner Nicky Clark about growing up with spina bifida, her sporting career and her new role in the House of Lords

• guardian.co.uk 
• Friday 24 February 2012 05.00 EST

Link to this video Tanni Grey-Thompson

Literally when mum and dad were told I had spina bifida, mum went "right, OK, will she ever be able to have kids?" Why on earth she asked that question no one has any [idea] and the sort of went "yes, I suppose". And she went, "oh right, OK" and took me home.

Because when I was a baby there weren't any problems, I crawled and I walked, it was kind of much easier for them to deal with it and it was only as I grew up and got to the age of sort of five, six that I started to have problems walking and then by the time I got to the age of seven I was paralysed, it had sort of given them time to get used to the system and get used to the doctors and just understand how to play the game of that medical, because it was a very medical model back then. So mum and dad did not bring me up [any differently] I was the same as Sian [her sister]. I remember dad very clearly, he was an architect so he knew how inaccessible the world was because he had helped design it, and him saying "I don't care if you are in a wheelchair, you have just got to get on with it". And that was really positive at that point because it just gave me a lot of confidence. My parents were amazing because they just did not tolerate discrimination and way before we talked about medical model or inclusion or any of that, they did not know any of that stuff, but they just knew that the right thing to do was to educate and include me in society.

Nicky Clark
And to spread that message to other people so saying it might be acceptable, it might be routine, but it is wrong?

Tanni Grey-Thompson
I remember trying to go to the cinema with my friends, so I must have been nine or 10, and being told I could not go in because I did not have an adult with me and my mum sending me back with my friends, because we had left, and mum going "go back, go back, I am not taking you home, go and tell them that you have never spontaneously combusted". And me going OK, and we all went back and they tried to send me out again and me saying "no, you can't send me out because I am not a fire risk I have never spontaneously combusted".

Nicky Clark
That was the reason?

Tanni Grey-Thompson
Yes, fire risk: "We don't want people like you in because you are a fire risk". So mum and dad taught me in different ways to deal with it and I still use a lot of that stuff now, I still experience people who talk down to me, or discriminate, or want to try and discriminate, and it is quite good to have had all those years of practice because you just get better at it, because you have spent so long dealing with it.

Nicky Clark
When did your sporting ability first show itself? Was that primary school or later on?

Tanni Grey-Thompson
There were no, or very few, lifts, there were no drop kerbs, so you had to learn to jump up the kerb. There were no accessible toilets, there were very few public toilets, so if I wanted to go to the loo out, if I wanted to go out with my friends, you kind of had to learn to climb stairs and to drag my chair and did that. To do that I had to be fit and that came from doing sport and then just gradually over time I realised that actually I was quite a competitive person - a little bit, hugely competitive, I am just - that is part of my parents' encouragement to do sport. Because I just wanted to race over everything, I wanted to beat my sister at everything, and they thought it would calm me down ...

Nicky Clark
.. and channel it a little bit?

Tanni Grey-Thompson
... and just "let's tire her out" and now I have got a daughter I think I can see why they did that but also it was a natural thing to do.
Back then, I was 12 in 1982, the word paralympic had not been invented so there was very little disability sport. You did not see disabled people in society, they were very much excluded, but then I remember watching the London Marathon and in the early 80s they had a wheelchair race as part of the London Marathon and that kind of changed pretty much my life for me because I remember saying to mum "I'm going to do the London Marathon one day" and her saying to me "yeah, of course you are, don't embarrass me" you know parents are very low key about stuff. but I remember seeing that and thinking that is what I wanted to do that is the sport for me - wheelchair racing, nothing else, that is the only sport for me.

Nicky Clark
You are seen as being an icon as well, I think, to many disabled people. Does that give you an added pressure, is that a great responsibility? Do you feel that you have forged that path and that you have made that route easier, that young disabled people with a sporting interest can go "I want to be Tanni Grey-Thompson"?

Tanni Grey-Thompson
I hope I have made it easier but the reality is it is fairly difficult, if you are a disabled child who wants to do sport, because it is still hard to do inclusive sport in schools, it is still a challenge to find sports clubs that will willingly embrace you and yes there are lots who do but there is also a number who panic a bit and think what do we do but for me it was always about making it better and there was a responsibility it was not every day I woke up thinking "I feel responsibility for disabled sport" but there was a certain part of what I was doing I need to make it better for the kids coming through they should not have to fight for the same things I did. They should not have to fight for equitable kit or equitable funding or recognition or people telling [them] "you know, its so brave and marvellous what you do". Elite athletes should not be fighting for that and so I hope some of those things have changed and then 25 years of my life in athletics and then I have a bit of a gap and I come to the House of Lords and then I find that I am fighting for different things in a different way, but there are still that kind of responsibility that all the opportunities I had, and I had lots of opportunities and a bit of luck and lots of help, other people should try and have some of that as well.

Archive news report
Tanni Grey-Thompson knows all about winning, medal after medal at the paralympics. But she was taking on a different opponent - from the track to the House of Lords - challenging the government's plans to change disability benefits.

Nicky Clark
So in terms of your role as a people's peer, when it comes to something like the welfare reform bill, do you feel then a huge sense of responsibility?

Tanni Grey-Thompson
It is a responsibility because it is about that I don't want to disappoint people and I don't want to give people false hope that it is OK because I can just change the world, actually that is not how this place [the House of Lords] works so I was always interested in benefits and support and welfare. And they the bill came along at a really good time but I am still on a massive learning curve in terms of the politics of this place. What is great about being in sport was when you won, you got a gold medal and you knew you had won. In here, you can push the minister to make loads and loads of concessions or a little bit and sometimes you don't know if you have won or not and it is not just down to the vote, although that is quite a simplistic way of looking at it. Sometimes you can win and sometimes you don't realise you have won until two days later and you think "actually, that was kind of OK" and I learned a lot form what we went through with welfare reform because because I got involved because I was interested and I cared and I thought "it is a fantastic bill that I can follow through from beginning to end to understand how each stage works". it is very emotional because I know, personally know, lots and lots of disabled people who are just sitting there thinking that the lords is where we can make a difference. That's a massive responsibility, it is why I work so hard here and why I am here lots and lots of days a week and lots of hours every day is because to make it effective change you have got to be here and you have got to know people and you have got to understand how the game is played, you can't just come in, dither around a bit and hope that people are going to go with you and leave on the strength of one argument, it is much more complex than that. It is a bit like school, the food is a bit like school as well, but if you learn something every day you get better and better and then you can have a more effective chance of changing it.

By Rebecca Burton

Rburton@miamiherald.com

Posted on Monday, 03.12.12

Northeast Miami-Dade

‘KatGirl’ author will read from inspirational book Sunday at Bal Harbour Books and Books

Katherine Magnoli penned The Adventures of KatGirl to help kids learn about people with disabilities. The Sunny Isles Beach author, who teaches at North Miami Beach’s Kesher Day School, will sign copies of her book Sund

Local author Katherine Magnoli will read and sign copies of her book, The Adventures of KatGirl, at 12:30 p.m. Sunday at the Books and Books at Bal Harbour Shops, 9700 Collins Ave

Katherine Magnoli remembers the exact moment she decided to write a book. Magnoli, who is confined to a wheelchair, was sitting by the pool at her condominium in the summer of 2009, when she noticed a little girl staring at her.

“I started to think about little kids’ curiosity. Sometime when they see me they get scared, sometimes they want to ask questions but are afraid,” Magnoli said.

What began as a passing moment turned into a book that has sold over 1,000 copies to people, including President Bill Clinton.

Magnoli, now 27 and a teacher’s assistant at a North Miami Beach school , penned a children’s book called The Adventures of KatGirl.

Magnoli wanted to write a book about a superhero who was also confined to a wheelchair. More importantly, she wanted children to be able to identify with disabled people.

Her book’s heroine is a girl named Kat, who like the author is confined to a wheelchair — but can fly.
“Having a superhero in a book gives children someone to look up to. The fact that she’s in a wheelchair helps them to better understand disability,” said Magnoli, who lives in Sunny Isles Beach .

Magnoli will be reading and signing her book at 12:30 p.m. Sunday at the Books and Books at Bal Harbour Shops.

“If you’re going to explain disability, you have to do it in a way that the children are entertained, and try not to make it so serious and heavy,” she said.

That’s exactly what Carla Magnoli, Katherine’s mother, did for her daughter right before she entered kindergarten.

“When I was 5 or 6 I asked my mom why I was in a wheelchair,” Magnoli said. ”She came up with a story about my spine being a magical tree and I was missing some of the leaves to make me move my legs.”
Magnoli, the youngest of seven children, was born in White Plains, New York with a congenital defect called spina bifida, which is an incomplete closure of the spinal canal that causes various levels of paralysis. After her other siblings grew up and were out on their own, Magnoli and her mother moved to Miami-Dade in 2005 to be closer to her grandparents.

“I felt that being accepted by my peers was harder down here than in New York,” Magnoli said.
Magnoli said she wants her book to reach out to children dealing with any kind of problem, from bullying, to feeling left out. She said that just by visiting schools around the county and sharing her book, she knows it has an impact on the children.

“I’ve especially seen a change in how the children look at me,” said Magnoli. “Instead of a confused look, it’s ‘Oh my gosh, you’re so cool!’” she said.

During her classroom visits, Magnoli starts off by asking the children what they think about her, with responses varying from sad to scared to confused. After she reads the book, children often ask to take pictures with the real-life superhero.

“It definitely has a positive impact on the readers, which is the whole point of the book,” said Magnoli, who is majoring in special education at Miami Dade College.

The author works at Kesher Day School in North Miami Beach and says some of the kids say they read the book to their younger siblings every night.

“Hearing things like this definitely humbles me,” Magnoli said. “I never imagined my idea would’ve amounted to something like this.”

She also said she can’t take full credit and thanks her family for helping with the publishing, which included numerous trips to toy and exhibit fairs, as well as the American Library Association Convention. Her childhood friend from New York, Scott Antuono, illustrated the book.

“It was a long process to find someone who could do the pictures, but one we found Scott, it was the perfect combination,” Magnoli said.

Read more here: http://www.miamiherald.com/2012/03/11/2683336/katgirl-author-will-read-from.html#storylink=cpy

Prenatal surgery promises brighter future for babies with spina bifida

By ARAcontent

Posted: Feb. 16, 2012 | 1:10 a.m.
Updated: Feb. 16, 2012 | 3:20 a.m.

 

For expectant parents, the 18-week ultrasound marks an exciting milestone. For most, it is the first time they get to see their child, they can learn the sex of the baby and the doctor makes sure development is progressing normally. Mike and Katherine Mulligan of Cincinnati, Ohio, went for their first ultrasound in September 2000, and like most parents-to-be, expected to hear only good news. Instead, their dreams were dashed when they learned their unborn baby had spina bifida.

The Mulligans' baby had myelomeningocele (MMC), the most common, yet most severe form of spina bifida, in which an opening in the back exposes the fetus' developing spinal cord to progressive damage. They were told that a baby with this condition, even with surgery after birth, would likely face lifelong disabilities, including paralysis and cognitive impairment. But the Mulligans found hope in what was at the time an experimental fetal surgery available at The Center for Fetal Diagnosis and Treatment at The Children's Hospital of Philadelphia (CHOP), an internationally recognized leader in fetal surgery and fetal care.

Led by Dr. N. Scott Adzick, surgeon-in-chief of CHOP and director of the Center, team members had pioneered a surgical procedure to repair MMC before birth and had been performing it at CHOP since 1998. The team's nearly 30 years of work in the laboratory and with patients strongly suggested that operating on the baby in the womb, months before birth, could reduce the need to divert fluid from the brain, improve neurologic function and increase the likelihood that a child would be able to walk independently.
The Mulligans contacted CHOP, and after extensive testing and counseling, Katherine became the 29th patient for prenatal spina bifida repair at the center. For the surgery, a team of specialized doctors worked together to operate on the baby in the uterus. The spinal lesion was repaired and surgeons closed the skin to protect the spinal cord from additional exposure to the amniotic fluid. On Dec. 28, 2000 - his father's birthday - Sean Mulligan was born, weighing a healthy six pounds, seven ounces, with nothing more than a scar where his MMC lesion had been. "He came out kicking and screaming, so to speak, and he's been doing that ever since," Katherine says.

Sean's case was one of 58 fetal surgeries for spina bifida the CHOP center performed between 1998 and 2003. Their research helped lay the groundwork for the seven-year federally funded Management of Myelomeningocele Study (MOMS), a nationwide, multi-center, randomized prospective clinical trial, that compared prenatal surgery to postnatal surgery. Although the goal was to enroll 200 patients, the National Institutes of Health ended the trial in December 2010, after 183 surgeries because, by that point, the effectiveness of prenatal spina bifida surgery had been conclusively established. In February 2011 the results of the MOMS trial were published in the "New England Journal of Medicine" and fetal surgery for spina bifida became a standard of care at CHOP.

One year after the study's publication, CHOP's center had received more than 200 fetal spina bifida referrals from all over the world, and performed more than 100 evaluations and nearly 30 prenatal spina bifida surgeries. The team currently performs about three fetal surgeries for spina bifida each month.
"What was once just an idea is now a standard of care," says Adzick, "The path to get here has been long and fraught with extraordinary challenges. But the beauty of medicine is that, with determination and perseverance, we can change and improve practice to offer new hope."

Today, Sean is a healthy 11-year-old. He excels in school, and participates in Cub Scouts, soccer, basketball, tennis and swimming. He loves to play baseball and hang out with his three younger brothers. Sean's progress is followed yearly through a spina bifida clinic near his home. He has never needed a shunt and his bowel and bladder function are good. Because of this important medical research and surgical advances, more children now have access to the fetal surgery for spina bifida that Sean received - and all the possibilities it provides.

press release

Feb. 23, 2012, 3:00 p.m. EST

Texas Children's Fetal Center Performs Successful Fetal Surgery to Treat Spina Bifida

HOUSTON, Feb. 23, 2012 /PRNewswire via COMTEX/ -- As one of the country's leading medical centers diagnosing and treating fetal anomalies, Texas Children's Fetal Center is proud to announce the birth of Baby Charlotte, the team's first patient to undergo in-utero surgery for the treatment of spina bifida. Baby Charlotte's mother went into labor nearly 11 weeks after fetal closure was performed, and delivered on Saturday evening by cesarean section. Mother and baby are doing well.

"Texas Children's Fetal Center is now one of the very few centers in the country providing all aspects of fetal surgery, and the addition of this capability increases the options of our Texas and regional patients tremendously," said Dr. Michael Belfort, MD, Ph.D., obstetrician and gynecologist-in-chief at Texas Children's Hospital and professor and chairman of the Department of Obstetrics at Baylor College of Medicine. "We have a magnificent team of specialists from a number of departments working together in the best interests of our fetal and neonatal patients. I am incredibly proud to be a member of this outstanding team and to be able to play a role in this mission." 

Myelomeningocele, also known as spina bifida or open neural tube defect (NTD), occurs in 3.4 out of every 10,000 live births in the U.S. and is the most common permanently disabling birth defect for which there is no known cure. Myelomeningocele is a developmental defect in which the spine is improperly formed and the spinal cord is open to and fused with the skin; it is usually associated with hydrocephalus, or the buildup of cerebrospinal fluid in the brain, which requires surgical treatment to drain the fluid via an implanted device called a shunt. The standard of care is neurosurgical closure of the defect in the first days of life.

"A prenatal diagnosis of spina bifida can be daunting for families because it is often associated with a constellation of neurologic disabilities as well as hydrocephalus," said Dr. Robert Bollo, pediatric neurosurgeon at Texas Children's Hospital and assistant professor of neurosurgery at Baylor College of Medicine. "Closure of the spinal defect before birth reduces the risk of hydrocephalus and may improve motor function in select patients. Fetal surgery is an exciting new tool in our multidisciplinary commitment to life-long care of patients with spina bifida." 

The spina bifida program at Texas Children's Hospital includes a dedicated multidisciplinary team of physicians including pediatric specialists in neurosurgery, orthopedics, urology, physical medicine and rehabilitation, as well as physical therapists, social workers, and child-life experts, under the leadership of Dr. Kathryn Ostermaier, developmental pediatrician at Texas Children's Hospital and assistant professor of pediatrics at Baylor College of Medicine. 

Recently, a NICHD-funded study entitled the Management of Myelomeningocele Study (MOMS) published in the New England Journal of Medicine demonstrated a significant decrease in the risk of hydrocephalus for select patients undergoing fetal closure of the spine, as well as possible improvement in lower extremity function, compared to patients who underwent standard closure after birth. 

"The confirmation that fetal surgery may decrease the physical challenges some of these babies face is not only a ray of hope for families, it is also a significant achievement for fetal medicine," said Dr. Darrell Cass, co-director of Texas Children's Fetal Center and associate professor, departments of surgery, pediatrics and obstetrics and gynecology at Baylor College of Medicine. "Breakthrough studies like the MOMS trial are exciting and reaffirm our commitment to advancing fetal medicine and giving babies with complications and anomalies the healthiest possible start to life." 

The MOMS trial is the second fetal intervention that has proved beneficial through a multi-center randomized clinical trial. The first was the Euro FETUS trial for laser ablation in the treatment of twin-to-twin transfusion syndrome (TTTS). Texas Children's Fetal Center has performed almost 400 cases of laser ablation for TTTS. Very recently, a third in-utero intervention has been shown in a randomized clinical trial in Brazil to be of benefit in babies with congenital diaphragmatic hernia. This seminal study was published in February this year by Dr. Rodrigo Ruano, MD, Ph.D., who is now a member of the Texas Children's Fetal Center team. 

"We are excited to be able to offer these types of life-changing procedures to our patients through our one-of-a-kind Fetal Center," said Cris Daskevich, senior vice president at the new Texas Children's Pavilion for Women. "Our mission is about caring for women through every stage of their pregnancy and I am grateful we have a program that can provide hope for these mothers in such a scary time in their pregnancy."

The Fetal Center at Texas Children's Hospital has developed extensive screening and diagnostic algorithms for pregnancies with fetal spina bifida. It takes a large multi-disciplinary team to successfully complete these types of fetal surgeries. The team includes physicians from maternal fetal medicine, pediatric surgery and neurosurgery, anesthesiology, neonatology, pediatric radiology, cardiology and a highly-dedicated group of specialized nurses, ultrasound technologists and genetic counselors.

Texas Children's Fetal Center recently moved and is now open on the fourth floor of the landmark new facility, Texas Children's Pavilion for Women. Texas Children's Pavilion for Women ushers in a new era as the pediatric hospital expands into obstetrical and gynecological services, establishing one of the nation's premier facilities for women's, fetal and newborn health. 

For more information, please visit http://women.texaschildrens.org/ . 

About Texas Children's HospitalTexas Children's Hospital, a not-for-profit organization, is committed to creating a community of healthy children through excellence in patient care, education and research. Consistently ranked among the top children's hospitals in the nation, Texas Children's has recognized Centers of Excellence in multiple pediatric subspecialties including the Cancer and Heart Centers, and operates the largest primary pediatric care network in the country. Texas Children's is completing a $1.5 billion expansion, which includes the Jan and Dan Duncan Neurological Research Institute; Texas Children's Pavilion for Women, a comprehensive obstetrics/gynecology facility focusing on high-risk births; and Texas Children's Hospital West Campus, a community hospital in suburban West Houston. For more information on Texas Children's, go to www.texaschildrens.org . Get the latest news from Texas Children's by visiting the online newsroom and on Twitter at twitter.com/texaschildrens.

Available Topic Expert: For information on the listed expert, click appropriate link.Darrell Cass http://www.profnetconnect.com/Darrell_Cass

Contact: Christy Brunton832-824-2645clbrunto@texaschildrens.org

SOURCE Texas Children's Hospital

Copyright (C) 2012 PR Newswire. All rights reserved

Medical College of Wisconsin Researcher Receives Award to Study Spina Bifida

By Maureen Mack

March 10, 2012 

Michele Polfuss, Ph.D., R.N., CPNP-AC/PC, a Pediatric Endocrine & Diabetes Nurse Practitioner with the Medical College of Wisconsin, and a researcher with Children’s Research Institute, has received funding from the Spina Bifida Foundation to further her work.

Dr. Polfuss was awarded the “Ashley Rose Advancement in Research Award” for her project to study the body composition in children with spina bifida. The award supports projects in spina bifida research conducted by young investigators, under the mentorship of senior investigators.

The pilot study will examine the feasibility of obtaining and comparing four methods of measuring height, and five methods of obtaining body composition measurements, in 26 children with spina bifida. The study will explore cost, as well as the efficacy of using a preparation manual developed by a child life specialist, to assist children with understanding the project and coping with the different measurements.

The findings will provide the basis for a larger multi-state study that will begin to characterize the growth, body fat, and distribution of body fat in patients with spina bifida. Additionally, researchers hope to create a formula to accurately predict fat mass from clinically available body measurement data.

Dr. Polfuss is leading an interdisciplinary team which includes professionals in nursing, medicine, physical therapy, and child life. The study will be primarily conducted in the Pediatric Translational Research Unit at Children’s Hospital of Wisconsin.

Kathleen J. Sawin, Ph.D., CPNP-PC, FAAA, Research Chair in the Nursing of Children (a position jointly supported by Children’s Hospital of Wisconsin and UWM College of Nursing); and Greg Liptak, M.D., M.P.H., Upstate Foundation Professor of Pediatrics and Director, Center for Development, Behavior and Genetics, College of Medicine, Upstate Medical University, State University of New York, will serve as mentors for Dr. Polfuss.