Wednesday, September 28, 2011

Poison concert benefiting the Down Syndrome Foundation of Florida

from PR Web:

Join the Down Syndrome Foundation of Florida for a one-of-a-kind event: Poison at Hard Rock Live Orlando on Nov. 5, sponsored by Alcatel One Touch®. Tickets are on sale now at

Poison added this unscheduled and intimate concert after the end of their Reunion Tour. It is unlike anything they have ever done before! This is a one of a kind event! Exclusive VIP event packages are available for a limited time only at VIP passes – a total of 153 are available – will entitle holders to attend a VIP barbecue on the John Lennon Terrace after the concert.

This is the first time the band has ever held this kind of VIP event. This is Poison’s way to say thank you to a select group of their biggest fans while they STAND for a great charity!

All proceeds of the concert will go to support the vision and mission of the Down Syndrome Foundation of Florida. The Down Syndrome Foundation of Florida (The Foundation) is a non-profit organization started by a group of visionary parents who wanted to have a direct impact on children, families and the community as they journeyed through life with a loved one with Down syndrome.

Headquartered in Orlando, The Foundation is a grassroots organization made up of volunteers who believe that through creative programs and partnerships, we can facilitate opportunities and experiences so that there is no mystery or myth about people with Down syndrome.

The Foundation’s goal is to promote inclusion, understanding and acceptance by expanding opportunities for individuals, families and communities touched by Down syndrome. Visit for more information.

Homecoming King challenges society's preconceptions about what he could or should do

Fall Friday nights in South Texas mean high school football. Along with the season come traditions such as homecoming and the election of student body royalty.

Homecoming kings and queens and their royal courts represent a flight of fancy, an opportunity to play make-believe and claim the regal titles of a fantasy world. But what took place last week at Alamo Heights High School was a real-world lesson about human spirit and the nobility of human character.

Heights senior Drew Boynton has Down syndrome. At some point, he mentioned to classmates his desire to become this year's homecoming king.

It might have seemed like a whimsical notion at first. But the campaign to elect Drew gained momentum, first among his fellow special education students and their peer mentors, then among others in the student body.

When the votes were tallied last week, Drew had won the crown. In an emotional halftime ceremony Friday night at Orem Stadium, Drew claimed his title.

Not so many years ago, the idea that students with developmental disabilities could be educated in a traditional school environment seemed like a whimsical notion. Yet people like Drew have challenged society's preconceptions about what they could or should do.

Alamo Heights students deserve praise for turning Drew's dream into a reality that he will cherish for a lifetime. But the biggest congratulations are due to Drew for reminding those around him of the potential for greatness that resides within every human being.

Tuesday, September 27, 2011

Obama Administration Sets High Bar for Flexibility from No Child Left Behind

from the U.S. Department of Education:

In an effort to support local and state education reform across America, the White House today outlined how states can get relief from provisions of the Elementary and Secondary Education Act—or No Child Left Behind (NCLB)—in exchange for serious state-led efforts to close achievement gaps, promote rigorous accountability, and ensure that all students are on track to graduate college- and career-ready.

States can request flexibility from specific NCLB mandates that are stifling reform, but only if they are transitioning students, teachers, and schools to a system aligned with college- and career-ready standards for all students, developing differentiated accountability systems, and undertaking reforms to support effective classroom instruction and school leadership.

"To help states, districts and schools that are ready to move forward with education reform, our administration will provide flexibility from the law in exchange for a real commitment to undertake change. The purpose is not to give states and districts a reprieve from accountability, but rather to unleash energy to improve our schools at the local level," President Obama said.

Release of this package comes nearly a decade after NCLB became law, and four years after it was due to be rewritten by Congress. NCLB shined light on achievement gaps and increased accountability for high-need students, but it also encouraged states to lower standards and narrow curriculum, focused on absolute test scores instead of student growth and gains, and created one-size-fits-all federal mandates.

Education Secretary Arne Duncan said, "We want to get out of the way and give states and districts flexibility to develop locally-tailored solutions to their educational challenges while protecting children and holding schools accountable for better preparing young people for college and careers."

In recent months, states have led a "quiet revolution" to move beyond NCLB's vision. States have taken the lead in pursuing reform and innovations, including widespread adoption of college- and career-ready standards, development of new assessments, and other reforms in areas including teacher and principal evaluation and support, and turning around low-performing schools.

The ESEA flexibility package announced today, developed with input from chief state school officers from 45 states, will spur momentum across America to implement a new educational system aligned to college- and career- readiness, even as the more comprehensive reforms outlined in the President's Blueprint for Reform await Congressional reauthorization of the ESEA.

This flexibility package was developed under the waiver authority explicitly granted to the U.S. Department of Education under the ESEA, and has been exercised under the previous Administration. The flexibility will begin to have an impact during the 2011-2012 school year and will have increasing impact in subsequent years.

For a fact sheet on the details of the flexibility announcement click HERE.

Monday, September 26, 2011

Down Syndrome Study Finds Families Are Happy

from Disability Scoop:

Having a child with Down syndrome may come as a surprise, but it’s a good experience, families are reporting in a trio of new surveys.

Researchers surveyed more than 3,000 family members and people with the chromosomal disorder across the country for what’s believed to be one of the largest looks at life with Down syndrome. The findings, which will be published in three articles in the October issue of the American Journal of Medical Genetics, offer a rosy picture.

The vast majority of parents said they have a more positive outlook on life because of their child with Down syndrome. And, nearly 90 percent of siblings indicated that they feel like they are better people because of their brother or sister with the developmental disability.

Nearly all of the survey respondents with Down syndrome said they were happy with their lives, themselves and their appearance. Only 4 percent said they felt sad about their life.

“As international discussion is mounting over the new prenatal tests, family members have now had their say about life with Down syndrome,” said Susan Levine from the disability nonprofit Family Resource Associates, who worked on the study alongside researchers at Children’s Hospital Boston and the Dana-Farber Cancer Institute. “And, more importantly, the people with Down syndrome themselves have clearly stated that they consider their lives valuable.”

Researchers did acknowledge that the survey population could be a slightly biased one since all respondents came from families that are members of nonprofit Down syndrome groups.

Nonetheless, they say the findings are valuable since they offer the “largest and most comprehensive portrait of life with Down syndrome to date.”

Sunday, September 25, 2011

let's put the person first, not the disabilty

from Disabilty is Natural:

Do the words used to describe you have an impact on your life? You bet! Contrary to the age-old "sticks and stones" lesson we learned as children, words do matter!

For too long, people who happen to have conditions we call "disabilities" have been subjected to devaluation, marginalization, prejudice, and more.

And the first way to devalue someone is through language, by using words or labels to identify a person/group as "less-than," as "the others—not like us," and so forth.

Once a person/group has been identified this way, it makes it easier to justify prejudice and discrimination.

Our language shapes our attitudes; our attitudes shape our language; they're intertwined.

And our attitudes and language drive our actions!

Using People First Language—putting the person before the disability—and eliminating old, prejudicial, and hurtful descriptors, can move us in a new direction.

People First Language is not political correctness; instead, it demonstrates good manners, respect, the Golden Rule, and more—it can change the way we see a personread the powerful "One Mother's Testimony" on the Explore/News and Notes page.

Saturday, September 24, 2011

Photography exhibit is making its U.S. debut in Dublin

from Dublin News:

The Dublin Arts Council, 7125 Riverside Drive, will host a roundtable discussion Tuesday, Sept. 27, about a new exhibition on display through Nov. 4.

Shifting Perspectives, a photography exhibition depicting Down syndrome, will be on display Sept. 27 through Nov. 4 at the Dublin Arts Council.

It is the first time the international exhibition has been seen in the United States.

Shifting Perspective is "... a poignant photography exhibition providing insight into the joy and wonder of being human, and living with Down syndrome," according to a press release from the Dublin Arts Council announcing the exhibition.

A selection of photographs, taken during a nine-year period by numerous photographers in the United Kingdom, depicts the everyday interactions of people of all ages living with Down syndrome.

Photographer and Shifting Perspectives curator Richard Bailey, of the U.K., will join local photographers Marcella Hackbardt and Abdi Roble, in a discussion of the exhibition and the larger societal issues it addresses.

Ann Bremner, of the Ohio State University's Wexner Center for the Arts, will moderate the forum beginning at 5:30 p.m. Sept. 27 at the Dublin Arts Council.

A reception for the artists, from 6:30 to 8:30 p.m., will be held after the forum.

The exhibition remains on display until Nov. 4.

It includes images captured by seven photographers and is making its U.S. debut in Dublin.

The exhibition originated in the U.K., and has since been viewed in Turkey, the People's Republic of China, Columbia and parts of Canada.

The exhibition and related programs are intended to raise awareness of Down syndrome.

Dublin-based Down syndrome Achieves, along with the Down Syndrome Association of Central Ohio, are collaborating with the Dublin Arts Council in presenting the exhibition.

October is Down syndrome month in the United States.

The exhibition is supported in part by Glaxo Smith Kline, the Dublin Foundation, and a grant from the Greater Columbus Arts Council.

Shifting Perspectives will be on view in the Dublin Arts Council gallery.

Viewing hours are 10 a.m. to 7 p.m. Tuesday, 10 a.m. to 5 p.m. Wednesday through Friday, and 11 a.m. to 2 p.m. Saturday.

The forum, reception, and continuing exhibition are free to attend and open to the public.

Friday, September 23, 2011

She makes the most of what she's got


Growing up with a younger brother who has Down syndrome inspired Dr. Eileen Quinn to become a developmental-behavioral pediatrician.

"He's just one of my favorite people, and I felt like I wanted to work with people with disabilities," Dr. Quinn said of her 48-year-old brother, Dan Quinn, who lives in the Detroit area. "It's important for them to get optimal medical care."

So Dr. Quinn was prepared when she and her husband, Dr. Peter Smythe, found out their fourth daughter was going to be born with Down syndrome. Sara's birth seven weeks early with a heart defect was unexpected, but otherwise Dr. Quinn was ready.

"I was the most perfect parent to have a child with Down syndrome, there's no question about it," said Dr. Quinn, a University of Toledo medical school faculty member who works at Mercy Children's Hospital.

Sara underwent heart surgery at 6 months, and now the 13-year-old is a student and athlete at Sylvania's Timberstone Junior High. Someday, Sara hopefully will work and live in the community with some assistance, her mother said.

Showcasing such abilities and raising awareness about Down syndrome is the focus of the 10th annual Buddy Walk held by the Down Syndrome Association of Greater Toledo, an annual event for Sara and her family. Nearly 1,000 people with Down syndrome, their families, friends, and other supporters are expected to take part in the Oct. 2 walk at UT's Rocket Hall.

"I think it's important to have our kids out in the community," Dr. Quinn said. "They're our little ambassadors."

Down syndrome is a chromosomal abnormality affecting more than 350,000 people nationwide. A small percentage have an inherited form of Down syndrome, but that is not the case with Sara, Dr. Quinn said.

Not only does Dr. Quinn help those born with Down syndrome, but she treats babies born with a wide range of birth defects and neurological problems. And, these days, many of the children she sees have autism or other developmental disabilities, the pediatrician said.

Both Dr. Quinn and her mother were near or older than 40 when Sara and her uncle were born, which increases the incidence of Down syndrome, Dr. Quinn said.

Unlike when her brother was born, however, children with Down syndrome are more accepted these days, and they have more medical benefits and opportunities, she said.

When Sara played soccer, the Sylvania Youth Soccer Association allowed her to be an extra player on the field, Dr. Quinn said. That is one example of how groups and schools have made alterations so Sara could participate in activities and classes, she said.

"I just love the little bit of creativity … to include her," Dr. Quinn said, adding that it also helps other children become more tolerant of those with disabilities.

Sara receives educational assistance but attends classes with non-disabled peers at Timberstone, where she is a member of the volleyball team, a sport favored by older sisters Kathryn, Colleen, and Bridget. Swimming is Sara's favorite sport, but she also does karate and is well-versed in volleyball.

"Bump, set, and hit," said Sara, a seventh-grader who pumped her fist every time she hit the ball over the net in a pregame warm-up recently as her parents watched.

Luckily, 11 girls tried out for the 12-member volleyball team, so Sara was able to clinch a spot, Dr. Quinn said. Sara just wanted to be involved and with her friends, said her mother, who wanted her youngest to have fun, get some exercise, and learn teamwork, just like her sisters.
"I'm not looking for playing time and for her to be the star," Dr. Quinn said. "She and I are perfectly OK if she cheers most of the time."

While her older daughters have received numerous accolades for both athletics and academics, Dr. Quinn said while watching Sara, "I'm just as proud of that girl over there. She makes the most of what she's got."

Thursday, September 22, 2011

BPA could increase risk of Down syndrome

from EurekAlert:

BPA alters development of in vitro ova and could increase risk of Down syndrome./

Bisphenol A is omnipresent in the plastic of common products such as beverage bottles, cans or baby bottles.

Researchers at Universitat Autònoma de Barcelona, in collaboration with the Vall d'Hebron Hospital Fetal Tissue Bank, the Department of Gynaecology and the Research Unit of Paediatric Endocrinology, analysed the effects of Bisphenol A (BPA), a polymer widely used to manufacture plastics, in an in vitro culture of ovaries. The research demonstrated that exposure to this substance gravely altered the development of oocytes and future ova, possibly diminishing the fertility of a woman's offspring and at the same time increasing the risk of Down Syndrome in following generations.

The research, published in Human Reproduction, was carried out with a culture of 21,570 in vitro oocytes. Results demonstrated that exposure to Bisphenol A in concentration levels permitted by health authorities is harmful to the fetus. BPA reduces the number of oocytes (cells which develop into ova) and therefore can affect negatively a woman's fertility and double the risk of chromosome exchange during the cell division process. Specific observations of chromosome 21 in the development of 90 oocytes revealed that exposure to BPA could increase the risk of Down Syndrome in the future offspring of the fetus.

The research provides conclusive data for the debate on how BPA affects the health of individuals. Previous studies on mice and worms demonstrated that reproduction is affected and that exposure to BPA during gestation affects the viability and quality of the cells which later become ova developing in the fetus.

For the first time, human cells were used in a research to analyse the process of cell division of the oocytes - meiosis - in which chromosomes join and exchange material, i.e. meiotic recombination.

Oocytes were cultured for 7, 14 or 21 days in different environments, with the presence of BPA and in control cultures without the substance. Data obtained in vitro with human cells was practically identical to that obtained with in vivo animal models, while the effects on meiotic recombination, which could lead to the appearance of Down Syndrome, in humans are even greater than those observed in mice.

"According to our results, BPA does not directly affect the fertility of pregnant women, but that of their daughters and granddaughters. It is a multigenerational effect", explains UAB professor Montserrat Garcia Caldés, director of the research. She goes on to say that "the increase in oocyte mortality in the fetus could diminish ovarian reserve numbers and the quality of the future mother's ova. At the same time, alterations in the recombination of chromosomes in the process of cell division increase the possibility of numerical alterations, such as monosomy (only copy of a chromosome in embryo cells) or trisomy (three copies)."

Concentration levels applied in the experiments were within the safety limits marked by European (EFSA) and US (EPA) authorities. The research therefore suggests that staying within legal limits does not imply that exposure to the substance is innocuous.

"We are exposed to BPA on a daily basis, mainly through oral exposure, since we can find it in lunch boxes, beverage bottles and food storage containers", Miguel Àngel Brieño-Enríquez reminds us. First author of the article, Brieño-Enríquez, from the University of San Luis Potosí, Mexico, is now researcher at the UAB Department of Cell Biology, Physiology and Immunology. According to him, "although we generally metabolise the substance, pregnant women retain more fluids and the fetus could be affected by high concentration levels."

Wednesday, September 21, 2011

Global Down Syndrome Foundation's Gala - "Be Beautiful, Be Yourself"

From MarketWatch:

The Global Down Syndrome Foundation announced that Gladys Knight, the Empress of Soul will perform live at its inaugural Washington, D.C. Gala - Be Beautiful, Be Yourself.

Washington's most powerful and influential leaders and professional athletes will gather to support Down syndrome research and advocacy on Wed., Nov. 16, 2011, at the J.W. Marriott in Washington, D.C.

The Foundation will honor Sen. Tom Harkin (D-Iowa) & Rep. Pete Sessions (R-Texas), two Congressional champions for the cause, with the Quincy Jones Exceptional Advocacy Award for their strong support and advocacy for the rights of people with disabilities. More than 600 friends of the Foundation are expected to attend, including national and local celebrities, congressional leaders, administration officials, ambassadors from around the world, members of the media, and senior corporate and association executives who share a commitment to human rights, civil rights and people with Down syndrome.

The event will include cocktails, dinner and a full-scale fashion show featuring beautiful guest models with Down syndrome, escorted by celebrities and professional athletes. The evening will be capped off with music from the Empress of Soul, Gladys Knight. VIP tickets include preferred seating, a VIP reception and photo ops with celebrities including Gladys Knight. Proceeds from the evening will benefit the Linda Crnic Institute for Down Syndrome, the first academic institute with a mission to eradicate the medical and cognitive ill effects associated with the condition.

The Global Down Syndrome Foundation will be hosting auditions for guest models with Down syndrome on October 5, 2011. Auditions will be held from 5:30-7:30 p.m. at the JW Marriott, 1331 Pennsylvania Avenue, N.W., Washington, D.C. 20004. For more information and to register for auditions, please contact Abby Perlmutter at or 303-468-6665.

This year marks the debut of the Global Down Syndrome Foundation Gala - Be Beautiful, Be Yourself in Washington, D.C. In its third year in Denver, Colo., the event draws 1,200 attendees and notable supporters including Quincy Jones, Jamie Foxx, Timothy P. Shriver, "Survivor" host Jeff Probst, super model Beverly Johnson, award-winning actor John C. McGinley, NBA champion and New York Nicks' Chauncey Billups, pro golfer David Duval, and NFL champions Ed McCaffrey, John Lynch, Brian Griese, and John Elway.

The 2011 Ambassador for the Washington, D.C. event is Alex Sessions, the son of Rep. Sessions, who is a 17-year-old self advocate and a third generation Eagle Scout. He has won Special Olympic medals in swimming, basketball and track. His family will be attending and are important supporters and advocates of the Global Down Syndrome Foundation.

Established in 2009, the Global Down Syndrome Foundation's primary focus is to support the Linda Crnic Institute for Down Syndrome. The Crnic Institute is the first organization in the United States with the mission to eradicate the medical and cognitive ill effects associated with Down syndrome through basic and clinical research and through clinical care. The Crnic Institute incorporates scientific partners both locally and globally, with headquarters at the Anschutz Medical Campus in Colorado.

Sponsorship packages are available starting at $5,000. For ticket information, please contact Katie Maness at 703-288-8695 or To learn more about the Global Down Syndrome Foundation, please visit us at .

Moms say their children with Down syndrome are ‘gifts’


On her blog, Christine Sheffield references a poem called “Welcome to Holland,” a place she’s never lived.

The poem was written by a mother about having a child with Down syndrome, an experience Sheffield can relate to since the birth of her son Braden. The poem likens having a baby with a disability to making big plans to visit Italy and ending up in Holland. You buy guidebooks, learn Italian phrases — it’s your dream destination.

So how did I get to Holland?

It’s a question asked by many parents once they find out their baby has Down syndrome. But, it turns out, Holland is a beautiful and majestic place, Sheffield writes. And she wants others who will never go there to know that, too.

“I want to show people that a Down syndrome diagnosis is not the end of the world,” Sheffield, 41, said. “It’s not something to be feared. The more we show we’re a normal family living a normal life, the more acceptance we’ll have in society.”

The Antelope resident has a blog about the joys of raising her 10-month-old son Braden. He has brought lots of surprises, including a trip to New York City Thursday. Sheffield, Braden and her 19-year-old daughter Ashley are attending the annual Buddy Walk event that kicks off October as Down Syndrome Awareness Month.

The family was invited to attend after a photo of Braden was chosen as part of a video that airs in Times Square during the walk.

Both raised in Roseville, Christine and her husband Danny Sheffield graduated from Oakmont High School and have been married 21 years. They already had five children — one died as a baby from sudden infant death syndrome — and Braden was a surprise.

Before learning she was pregnant, Sheffield read a magazine article about a local family adopting a Ukrainian baby with Down syndrome. She and her husband considered adopting a baby with a disability. Then she had her own.

“It’s not much different than being a mom of a baby without Down syndrome, or as we say, a ‘typical’ baby,” Sheffield said.

About 50 percent have a heart defect and Braden has a small hole that doctors expect will close. Some people with Down syndrome will develop vision and hearing loss, and thyroid problems.

Down syndrome is one of the most common genetic birth defects and affects about 3,400, or one in 800, babies in the United States a year, according to the National Down Syndrome Society.

Sheffield said some parents worry about the potential burden of raising a child with Down syndrome, which does involve extra trips to the doctors, extended care when the child ages and lots of future planning. Braden has low muscle tone and is developmentally delayed.

Sheffield says all these challenges are manageable, which doesn’t mean the times have never been tough.

“I don’t want to be negative,” she said. “But to some extent you become ‘that’ family. It’s not a blatant thing. You just feel a little isolated. But you realize you have the same life you had before, just with a new person in it, and it’s really no big deal.”

Sheffield got involved with Reece’s Rainbow ministry and joined The Sisterhood, a support group for moms of kids with Down syndrome in the greater Sacramento region. Another mom involved is Beth Herrington, of Roseville, who has a 13-month-old daughter named Chloe. She also has four other kids, ages 9 to 14 years old.

Chloe was a surprise — Herrington got pregnant at 42. The chance of having a baby with Down syndrome increases with the mother’s age, but 80 percent of babies with the condition are born to women under 35.

“It was this great gift,” Herrington said. “I was excited. I didn’t mourn the loss of the quote-unquote perfect child.”

She describes Chloe — who has a small hole in her heart — as beautiful and larger than life.
“I always compare it to being in public with a celebrity,” Herrington said. “Chloe gets so much attention.”

A few months ago, Herrington convinced her husband that they should adopt a baby with Down syndrome. They found Olivia from Ukraine, who is 7 months old. They hope to bring her home by January.

Herrington also blogs and wants people to realize that babies with Down syndrome are “more alike than different.”

“What an unbelievable joy they are,” Herrington said. “Even for parents who think their world has ended, weeks later they see it’s the best child in the world. It’s not a scary, horrible thing. It’s wonderful.”

Tuesday, September 20, 2011

iPad, iPod, and iPhone apps to help early development

from Down Syndrome Education International:

Down Syndrome Education International is working with developers to create new learning opportunities for children with Down syndrome using portable devices including iPads and iPods. Recently released apps support language, memory and number skills development.

Computerised educational activities have the potential to offer significant benefits for young people with Down syndrome, with an emphasis on the visual presentation of information and opportunities to encourage lots of practice. DSE is working with partners in the UK, Europe and the US to create apps that target the developmental needs and learning styles of young people with Down syndrome. Some of the first of these apps are now available.

Special Words from Special iApps

Special Words teaches children to recognise written words, using pictures and sounds, on iPad, iPhone and iPod touch. The app has 3 games with increasing difficulty, Match Pictures, Match Words and Match Both.

Special Words comes with the vocabulary and pictures from the early steps of DSE’s See and Learn Language and Reading program, comprising of 96 written words children use in their early vocabulary.

It includes matching pictures, written and spoken words, in 8 languages: American and British English, Spanish, Catalan, French, German, Italian and Swedish. Users can easily replace the words and re-record the audio in any other language their child uses. Users can add more words, pictures and sounds for family members, friends, and familiar objects, to increase their child’s interest, and further develop their vocabulary.

Special Words was developed by Special iApps, a social enterprise founded by parents of a child with Down syndrome who have many years of experience in both education and software. Special iApps is donating a proportion of the global sales of Special Words to Down Syndrome Education International.


Memory Fun and Counting Fun from Felix Education Apps

Memory Fun is a memory game where the user has to remember the position of picture cards in order to recall the location of two matching cards. Starting with just four cards to choose from, up to 18 cards can be displayed with a vocabulary of over 100 words.

Counting Fun is a simple counting game designed to encourage practising counting from 1 to 10. Sound effects and animation engage the child’s attention while they tap each item displayed on the screen to hear and see each digit.

Felix Education Apps is a family run business based in Oslo, Norway, designing educational apps. Felix Education Apps is donating a proportion of the global sales of their apps to Down Syndrome Education International.

Monday, September 19, 2011

Registration opens for Down Syndrome Education Conference in Charlotte, NC, USA

from Down Syndrome Education International:

Registration is now open for the Down Syndrome Education Conference being held in Charlotte, North Carolina on October 20-22, 2011, hosted by the The Down Syndrome Association of Charlotte.

We are presenting a Down Syndrome Education Conference in Charlotte, North Carolina, on October 20-22, 2011, organised and hosted by The Down Syndrome Association of Charlotte. The event is being held at The Blake Hotel in Charlotte.

DSE speakers, including Professor Sue Buckley and Dr Kelly Burgoyne will be presenting in-depth (two day) tracks covering early intervention and early years education, elementary education, and speech and language therapy (October 20-21), and essentials (one day) tracks covering early intervention and early years education, elementary education, and high school education.

SureSteps provide stability for children who pronate while standing and walking

from SureStep:

SureStep is the most effective means of providing stability to children who pronate when standing and walking. This patented, dynamic system allows children to gain stability, while still allowing normal movement and function. Children with low muscle tone who have trouble with stability due to pronation can now walk, run and jump without the delays and instabilities that often result. SureStep is not a different brace, but rather a completely unique system that manages the foot and ankle without over-managing.
Until now, custom orthoses have always required casting which is messy and often traumatic to smaller children. SureStep is not only conceptually unique, but also unique because it requires no casting. Nine simple measurements provide all the necessary information to create the model of the foot and ankle over which the SureStep is custom fabricated. This means that no matter where you are, SureStep is available to you.

If you are tired of chasing red marks, pressure areas, calluses and blisters, then SureStep will be a welcome change. The frequency of skin irritations normally associated with custom orthoses reduces dramatically with SureStep. This is due in part to the softness and flexibility of the material used to create the SureStep system. The plastic is approximately the thickness and consistency of a plastic milk jug. This allows the orthosis to "flex" with the foot without applying undue pressure to the navicular, malleoli and metatarsal heads.

"As an orthotist and a father of a child with low muscle tone, I was determined to provide the best orthotic treatment regimen for my son Kevin. When Kevin was younger, I fabricated a variety of orthotics for his severely pronated feet. Some restricted certain activities like jumping; some made his legs tired and sore; some gave him blisters and callused areas; some just simply slowed him down. Frustrated by the functional limitations created by traditional rigid bracing made of hard plastics, I pursued the creation of a lighter and more flexible device that would allow and even encourage normal development of a child’s gait without decreasing function."
~ Bernie Veldman, CO

Kids, celebrities team up to educate about Down syndrome

Some special Central Texas kids are about to get the red carpet treatment. They are the stars of a calender that is meant to help educate the public about kids with Down Syndrome.

Teana Ross with the Down Syndrome Association of Central Texas joined KVUE to talk about the "Share the Passion" calendar.

Thursday, September 15, 2011

high school boy with Down syndrome stands out

from Winterpark Maitland Observer:

In the uniformed moving mass of about 200 Winter Park High School marching band students, you might not notice Sam Hagan — but that doesn’t mean he doesn’t stand out.

In the afternoon heat, the students practice their marching drill on the high school parking lot, flowing seamlessly — or not-so-seamlessly, depending on the run — together to form unified pictures, only viewable from above.

From this birds-eye view, it’s nearly impossible to pick Sam out from any other band member. But if you look hard enough, you’ll see him front row center.

He nods his head and pulses his drumsticks ever so slightly to the beat of the music as part of the front percussion ensemble, internalizing the pulse, preparing for his cymbal part.

Occasionally he’ll fidget to adjust his large black headphones — the one thing that distinguishes him from the others. He wears them to take the edge off the noise that comes with having a 200-piece marching band performing behind you, his mother Julie said. Having Down syndrome, Sam’s ears are more sensitive to the noise than others.

If he sees you watching too closely during rehearsal, he’ll shoot you a funny face, do a little dance or reach his mallet under his leg to drum his cymbal, until he hears someone shout “Sam!” reeling him back in.

‘More alike than different’

”More alike than different” are the words Sam’s mother, Julie, uses to describe her son, a sophomore this year, in relation to his Winter Park High School peers.

Despite his special needs, Sam is enrolled on a typical high school diploma enrollment track and participates in both marching and symphonic bands, as well as drama.

“It’s really priceless — all the opportunities he’s been given going to school here,” she said. “It’s been such a blessing.”

Sam is shadowed throughout the school day by his paraprofessional aide, Sharon Riley. She takes notes for Sam during lectures, so he can concentrate fully on the lessons being taught, and helps him in any way he needs. The pair has been together since Sam was in sixth grade.

“Sam is just a wonderful kid,” Riley said. “He surprises me every day.”

Riley, a well-known actress in her homeland of Puerto Rico, helps Sam do everything from run his lines for the school play — or “woofs” this year, as he plays the role of the dog in his Drama 2 class production of Susan Zeder’s “Wiley and the Hairy Man” — to introducing him to students in the classroom.

“Sometimes students are apprehensive around Sam; they just may not understand what he has,” she said. “But I encourage them to ask us questions and get to know him. Once they break that barrier, he fits right in.”

Fitting in

He fits in so well, Riley said, that often in classes students will compete to be Sam’s partner during group work.

The two who usually work with Sam in his drama class are Hannah Price and Hannah Rejonis – known as “the Hannahs”. But add in Sam, and they’re known as “The Trio”: Hannah P., Hannah R. and Sam H, his drama teacher, Robert Dutton, said.

“He’s probably the nicest kid you’ll ever meet,” Rejonis, who bonded with Sam over a mutual love of musicals and all things Star Wars, said.

“He’s so caring,” Price added. “He’s always the first person to come over to me if I have my head down or look like I’m having a bad day to ask what’s wrong.”

Dutton said Sam is wonderfully mischievous in class. “He has a delicious sense of humor,” he said. “But he shows a real purpose and desire to be there. I wish more of my other students had that.”

Last year, for his work ethic and ability to not let his disability get in his way, Sam was voted “most inspiring band student” as well as “outstanding freshman band member” by his peers, Dutton said.

“He’s always surprising in a really wonderful way,” he said.

Standing out

As a teenager with Down syndrome, Sam’s life may not always be easy, his mother said, but he has a great attitude.

His family has been actively involved with the Down Syndrome Association of Central Florida — headquartered in Winter Park — since he was born, which has given Sam numerous volunteer opportunities within the community and a place to socialize with other local kids with disabilities.
DSACF Executive Director Amy Van Bergen said she’s known Sam his whole life and has seen him thrive through the many activities he’s involved in.

“Sam is a great guy with a great sense of humor, and he’s very athletic,” Bergen said. “He’s a great representation and combination of his parents. They’re both tall, athletic and blond, and Sam is tall, athletic and blond.”

Bergen said Sam is someone who both breaks the stereotypes of Down syndrome and proves how active and successful someone with the condition can be. In past years, Sam has qualified for state championships in both cycling and swimming for the Special Olympics.

One of the main characteristics of Down syndrome, she said, is low muscle tone. To combat this, it is important that people with Down syndrome stay active and fit, but also makes doing so considerably harder. The same goes for auditory and visual processing. Both of these traits, she said, make all that Sam has accomplished that much more impressive.

“For him to be on that marching band field, he’s probably working two or three times harder than a typical kid because of Down syndrome,” Bergen said.

Big time dreams

Sam said his dream is to go to college at Ohio State University and continue to be in the marching band. He hopes to one day be the sousaphone player who dots the ‘I’ during the bands spell-out of “Ohio” during their pre-game routine. He plans to practice his sousa skills in the stands at football games this season.

“You guys will come watch me, right?” he asked the Hannahs.

“Of course we will,” Hannah R. said. “We’ll be there with shirts that say ‘I’m with the guy who dots the ‘I.’”

Sam erupts in a fit of laughter, the sounds echoing throughout the school auditorium where The Trio hangs out after school. It is a sound his aide would recognize anywhere and one Dutton hears frequently in class. Anyone that knows Sam, his mother said, knows him for that laugh and his great sense of humor.

“Sam is really a great kid,” Julie said. “But it’s really all the great opportunities that he has been given that make him thrive.”

Monday, September 12, 2011

Sisters with Down syndrome serve as homecoming queens

from Deseret News:

With eyes twinkling behind her glasses, Madi Sonju blew a kiss to her Deseret Hills High School classmates when her name was announced as a homecoming queen finalist.

She put a pudgy hand to her mouth and burst into tears when she heard her named called again a few seconds later as the 2011 queen. And getting a boost to place the tiara on her head was last year's homecoming queen, her older but shorter sister, Macey.

Both girls beamed as the crowd at Friday night's football game cheered and applauded.
"I can't believe the student body at Desert Hill High. They have been absolutely so supportive of my girls," said their mother Leslye Sonju. "To have them recognized like this is just a dream come true for both of them."

The Sonju sisters were born with Down syndrome.

"It feels so good," Madi said afterward still clutching the flower bouquet Macey placed in her arms.

Asked how long she had wanted to be homecoming queen, Madi said "forever."

The girls' father, Bob Sonju, called this year's and last year's homecoming events special moment in his daughter's lives. He said he can't say enough about the students, faculty and administrators at Desert Hills.

"They just include our kids in everything," he said.

Both girls have been active in school programs including dance classes and cheer. Macey graduated this past year.

Friday, September 9, 2011

Check out Webcast of "Getting Real II" - Promising Practices in Inclusive Emergency Management for the Whole Community

From The White House Disability Group:

The Office of Disability Integration and Coordination ODIC at the Federal Emergency Management Agency and our co-sponsors, the National Council on Disability NCD and the National Institute on Disability and Rehabilitation Research NIDRR and our partners the Interagency Coordinating Council on Emergency Preparedness and People with Disabilities ICC and the Emergency Management Institute EMI are hosting Getting Real II - Promising Practices in Inclusive Emergency Management for the Whole Community, September 12-14, 2011 in Arlington, VA.    
This year, we’re particularly excited to have a webcast generously supported by the National Council on Disability available for people who cannot join us in person. This webcast will include many of the Promising Practices presentations (and all will be videotaped for “on demand” viewing after the conference). Click on the link provided to register for the webcast Getting Real II. 


September 12, 2011

7pm – 10pm: Opening Plenary

September 13, 2011

9:00am – 10:15 am: Morning Plenary

10:30am – 12:40pm: Promising Practices

12:40pm – 1:30pm: Lunch

1:30pm – 5pm: Promising Practices

September 14, 2011

8:30am – 9:30am: Morning Plenary with Administrator Fugate

9:45am – 12pm: Promising Practices

12pm – 1pm: Lunch

1pm – 3:15pm: Promising Practices

3:30pm – 5pm: Team Reports and Closing Discussion

Please plan to join the Office of Disability Integration and Coordination and the National Council on Disability by webcast on Sept 12-14 for “Getting Real II- Promising Practices in Inclusive Emergency Management for the Whole Community”

National Preparedness Month - September 2011

“FEMA’s mission is to support our citizens and first responders to ensure that as a nation we work together to build, sustain, and improve our capacity to prepare for, protect against, respond to, recover from, and mitigate all hazards.”

Tuesday, September 6, 2011

Down syndrome and Alzheimer's

Dear Readers,
I would like to stray from our regular pattern of answering one of your emails or letters. The reason for this is a particular topic which many of you brought up during a recent lecture given by geriatrician Marina Blagodatny and psychiatrist Neil P. Dolan at the Trumbull Marriott.

The topic in question was dementia, specifically Alzheimer's dementia in people with Down syndrome. I hope that you do not mind my taking the opportunity to write about it some more.
Let's start with the definition of Down syndrome. It is a genetic disorder affecting one in 733 live births and accounts for about 15 percent of intellectual disabilitiy cases.

Symptoms of the learning problems associated with the syndrome range from mild to moderate, as does the patient's functional capacity. The cause of this disorder is, most of the time, an extra chromosome -- or genetic "building block" -- in our body. Chromosome 21 is the one affected. Normally a person has two copies of each of the chromosomes.

In at least 90 percent of Down syndrome cases, a person has three copies of Chromosome 21. This is not an illness one inherits from a parent, at least not in a majority of cases. The most commonly known risk factor is late maternal age. By age 45, a woman's risk of having a baby with this disorder is one in 35.

Life expectancy of patients with Down syndrome has increased dramatically in the last century. From roughly 10 years in the 1920s, it is now quite normal for those with Down syndrome to enjoy life way beyond age 50.

Unfortunately, there are many problems these patients and their families have to struggle with throughout their lives. People born with the syndrome age faster, and are prone to developing dementia.

It is known that 25 percent of Down syndrome patients have dementia by age 35. They are three to five more times more likely to get dementia as compared to patients the same age not born with the genetic disorder.

What is most perplexing is the fact that, although virtually all adult patients with Down syndrome have specific changes in the brain characteristic of dementia, not all of them have the symptoms.

For those of you who are more scientifically inclined, the changes are called neurofibrillary tangles and amyloid plaques, as well as loss of nerve cells in certain parts of the brain.

It must be clarified that people with other forms of intellectual disability not related to Down syndrome have the same risk and rate for dementia diagnosis as the non-affected population.

Scientists still do not fully understand why this is the case, other than that the Chromosome 21 abnormalities must play a significant role. Alzheimer's disease is the most common form of dementia. It is a progressive memory disorder that affects our ability to reason, remember, use language and think.

The disease can attack quickly and lead to demise in only a few years, or linger over 10 to 15 years, affecting not only the patient but the whole family. Approximately 4 million Americans are affected today by Alzheimer's. Presentation of the disease in patients with Down syndrome is quite different from that in other dementia patients.

Loss of language skills and the ability for self-care are quite common early. Seizures happen often in individuals who did not have them before. Incontinence, personality changes and sleep disruptions are also seen.

Since the mental abilities of patients with Down syndrome vary greatly to begin with, diagnosis of dementia is challenging. Unfortunately, the majority of patients are diagnosed late in the process of the illness. Standardized tests used in non-Down syndrome individuals do not apply to this group.

It is crucial for a specialist involved to have some idea of the person's cognitive baseline. Many advocate for the universal screening of Down syndrome individuals around age 30. There is a questionnaire called "The Dementia Questionnaire for Mentally Retarded Persons," which can help, as well as a few other available tools. As a rule, a specialized dementia center is the best place to follow a patient with Down syndrome and Alzheimer's. The input from the caregivers and the primary care physician are considered absolutely necessary for the proper diagnosis and the meaningful follow-up.

One of the important goals of early diagnosis is to rule out other reasons for cognitive decline and behavioral problems that can be potentially curable. Thyroid problems, excessive medication use, severe depression, and unrecognized hearing and vision problems may all present as similar or identical to Alzheimer's. Even simple infection can trick us.

The treatment of Alzheimer's dementia in Down syndrome patients is uncharted waters. Only one out of four drugs available has been tested in these patients, and no drug is specifically approved by the Food and Drug Administration. Trying them, however, may prove very beneficial, as they may help with behaviors and stabilize functional abilities.

Other medications, like antidepressants, mood stabilizers and anti-anxiety medications, may also play a role when used judiciously and closely supervised and monitored.

There is yet another reality of this particular scenario. Many primary caregivers of Down syndrome patients in their 40s and 50s can be their aging parents and/or siblings. Not only do they have to face their own fears about forgetfulness and their own memory lapses, they are often unable to meaningfully plan ahead.

Legal issues are important, as well as financial ones. There has to be a plan of care in case of a caregiver's illness or, as horrible as it is to think about, death.

I strongly recommend that all involved use their local Alzheimer's Association, as well as local Down syndrome support groups and the National Down Syndrome Society. The help of local religious organizations also can be priceless. Government support is available, albeit limited. All of us professionals involved in diagnosis and treatment of dementia are more than willing to help.

Dr. Beata Skudlarska is a Bridgeport geriatrician. Send questions to Bridgeport Hospital Center for Geriatrics, 95 Armory Road, Stratford CT 06614 or

Sunday, September 4, 2011

IEP Toolkit available for families of students with Down syndrome

From Let's Talk Down Syndrome:

Gretchen H. Carroll, M.A., Education Coordinator for the Jane and Richard Thomas Center for Down Syndrome, has created and researched the IEP Toolkit as an instrument for families of children with Down syndrome.

Helping Families of Children with Down Syndrome Become Knowledgeable, Prepared, and Empowered Partners in the IEP Process

This IEP Toolkit was written for you!

Here’s a little more about the IEP Toolkit:
The special education system can be confusing, frustrating, and overwhelming. The Individualized Educational Plan (IEP) is the written document that outlines your child’s specific educational program. We know a strong IEP is necessary for our child’s individual needs to be met. Yet it is common for us to feel insecure and unprepared during our child’s IEP meeting. Surrounded by teachers, administrators, and special education personnel, our voice can get lost. This toolkit was written to help you find your voice.
As family members of a child with Down syndrome, we come to IEP meetings with love for our child and a commitment to his or her education. We must also come with a strong understanding of the IEP itself, detailed information about our child’s specific needs, and an understanding of appropriate goals. This IEP Toolkit is designed to help you gather the necessary information. Focused preparation is essential to the development of an effective educational plan, and a strong IEP leads to improved educational success for your child.

Saturday, September 3, 2011

student with Down syndrome dancing at season opener

Ever since she was little, Megan Bjorklund loved to dance.

Her father remembers watching her dance to musicals on television. Her mom encouraged her with musical DVDs.

A dream comes to fruition tonight for the eighth-grader with Down syndrome when she performs with the St. Cloud Cathedral dance team at halftime of the Crusaders’ football game.

Cathedral plays Holdingford at 7 p.m. at St. Cloud State University in the season opener. It’s one of a number of opening games played this week in the area.

Bjorklund, the first Down syndrome student at Cathedral, will watch her brother Bjorn, a running back, play in the game.

“He’s amazing,” she said.

And Bjorn plans to stay on the field during halftime to watch his sister perform.

It’s a poignant moment for the Byron and Peg Bjorklund family, which includes children Andrew, 22, Jordan, 21, Bjorn, 17, Claire, 15, and Megan, 13. All either have participated or are participating in multiple activities at Cathedral. Claire is on the girls’ soccer team.

“She’s always full of joy, happy to see you,” Bjorn Bjorklund said of Megan.

“We’re active and she wants to do the same.”

So Megan will dance. She has practiced with the rest of the Cathedral dance team.

“She’s so proud to be a part of the football game,” Byron Bjorklund said.

No scoring yet

Dance team is recognized as a winter sport by the Minnesota State High School League. The fall is reserved for nonscored performances, like the one the team will do at halftime today.

“We love performing at football games because the crowds are so much better than at our meets,” senior captain Tasha Johnson said.

Without the stress of being closely scored as it is in the winter, many participants try dance team in the fall to see if they want to participate in the competitive season.

When Cathedral dance team coach Sara Marek was asked about Megan Bjorklund participating, she quickly said yes.

“There wasn’t a second thought when they asked to have her on our team,” said Marek, who became emotional when talking about Megan. “It was an immediate yes with no hesitation.”

“It’s all about inclusion. We need to be there for every kid.”

Teammates like Johnson, senior Kristi Clark and junior Whitney Hughs enjoy having Megan on the team. They help her out with the routines.

“It’s so much fun having her on the team,” Clark said.

“She’s doing so good,” Hughs said.

Gift from God

Megan Bjorklund was born on Sept. 11, 1998. Her parents knew she was going to have some difficulties when she was in the womb. They want to spread her story publicly because so many similar pregnancies are terminated.

They believe they’ve been blessed with a gift from God.

“She’s taught me more about myself than anything I can say that I taught her,” Byron Bjorklund said.

“I think we all can agree that we are created in God’s image.

“That’s what we say about Megan.”

Megan is aware of her situation.

Her mom asks her if she has Down syndrome. She nods her head yes.

Peg Bjorklund said there was never any question whether she would attend Cathedral like her brothers and sister. Many parents choose to send students like Megan to the St. Cloud school district, which has programs and support staff for cognitively challenged students.

But her support system at Cathedral is strong.

“Bjorn is really, really good with her,” Cathedral senior football player Michael Kerber said.

“Everybody likes her,” said Tommy McMorrow, another Cathedral football player.

Her mom says Megan has the same dreams and aspirations as many teenagers. She wants to have a boyfriend and be popular. And she wants to dance.

“It’s fun,” she said. “I like it.”

She said she’ll be a little nervous tonight. Her mother says she approaches the performance like everything else. She goes at it with a passion and isn’t afraid of failure or trying again.

“I’m looking forward to it,” Bjorn Bjorklund said of watching his sister dance. “I’m sure she’ll do great.”