Monday, March 31, 2014

Frequency domain analysis of ground reaction force in preadolescents with and without Down syndrome

from Science Direct by Jianhua Wu, Matthew Beerse, and Toyin Ajisafe: 

  • We study frequency content of vertical GRF in children with and without DS.
  • Children with DS have a similar fundamental frequency during treadmill walking.
  • Children with DS have a lower frequency at 99% and 99.5% of total power.
  • Walking faster with ankle load helps produce a more typical power spectrum in DS.

Children with Down syndrome (DS) display less stable and coordinated gait patterns in the time domain than their healthy peers. However, little is known about whether this group difference exists in the frequency domain. The purpose of this study was to investigate differences in vertical ground reaction force (GRF) in the frequency domain between preadolescents with and without DS. Twenty children at 7–10 years of age with and without DS participated in this study. Participants walked on an instrumented treadmill at two speeds with and without external ankle load. Vertical GRF was collected and the data was processed through a Fourier transform. Frequency content variables included fundamental frequency, power of the first five harmonics, and the frequency and number of harmonics at 95%, 99% and 99.5% of total power. Preadolescents with DS had a similar fundamental frequency as their healthy peers even though the DS group walked at slower speeds. The DS group displayed a different power spectrum of the first five harmonics and had the lower frequency and number of harmonics at 99% and 99.5% of total power. However, walking at a faster speed with external ankle load helped the DS group produce a power spectrum more similar to healthy children. Frequency content of vertical GRF provides additional assessment parameters in functional gait evaluation of children with DS. Treadmill intervention at a faster speed and with external ankle load appears to be clinically promising and needs further investigation.

Sunday, March 30, 2014

Campaign Viral Chart: Down Syndrome future mom ad doubles shares

by Ben Hall from Campaign Live UK:
The Coordown ad, created by Saatchi & Saatchi Italy, shows people with Down Syndrome offering advice to a mother who is expecting a baby that has been diagnosed with the syndrome. At the end of the two-minute video, the speakers’ mothers join them on screen.
This week, the ad was shared 516,589 times – almost double its total last week.
"First kiss", which was created by Tatia Pilieva, ranks seventh this week. The ad, which shows supposed strangers kissing for the first time, was shared 51,453 times in the past seven days.
Elsewhere, an ad for Durex, created by TMW, was shared 83,262 times this week. The ad promotes the condom brand's #turnofftoturnon campaign around Earth Hour, in which consumers are encouraged to turn off all electricity for one hour.
The video features couples in romantic settings being distracted by smartphones and tablet devices, before rediscovering each other and turning off their devices. They then retire to their bedrooms where the lights are turned off.
The ad then shows lights across famous landmarks, such as the Houses of Parliament and the Taj Mahal, being extinguished. It was shared 83,262 times this week and ranks fourth in the chart.
The chart is collated and ranked based on data provided by Unruly lists ads on YouTube by the number of shares across Facebook, Twitter and the blogosphere. Ads older than 30 days are not included.

Saturday, March 29, 2014

Get to know: Nancy Gianni, founder of GiGi's Playhouse, Inc.

by Tarah Thorne from My Suburban Life:
South Barrington mother Nancy Gianni founded GiGi's Playhouse, Inc., a national Down syndrome awareness and achievement organization in Hoffman Estates in 2003, shortly after her daughter Giuliana (GiGi) was born with Down syndrome.
Gianni said that as a new mother who knew nothing about Down syndrome, she felt devastated and hopeless, until she realized that Giuliana was more like her two other children, Franco and Isabella, than different....
Gianni shared her story with Barrington Suburban Life reporter Tarah Thorne, explaining how greatly her non-profit organization has grown in just over a decade.
Thorne: Can you believe how far GiGi's has come?
No. We are truly blessed. I am constantly blown away by our growth.
Thorne: What was your goal starting GiGi's?
Educating my own community on the potential of individuals with Down syndrome. I also wanted people to have a place to celebrate and understand their diagnosis and take away some of the fear associated with Down syndrome.
Thorne: In what ways has GiGi's changed or stayed the same today?
We have now evolved into education and achievement centers, offering free one-on-one tutoring in literacy and math and 30 other educational and therapeutic programs. We also went from one location in 2003 to 22 in 2014, with several more communities working to open in their areas.

Friday, March 28, 2014

Crenshaw: New CDC Stats Underscore Need for Congressional Passage of ABLE Act

, March 27 -- Rep. Ander Crenshaw, R-Fla. (4th CD), issued the following news release: With the Centers for Disease Control and Prevention (CDC) March 27th announcement of an increase in the prevalence of autism spectrum disorder, Congressman Ander Crenshaw, Chairman of the House Financial Services and General Government Appropriations Subcommittee, today (3/27) called for Congressional passage of the Achieving a Better Life Experience Act (ABLE Act - H.R. 647 and S. 313). Crenshaw, author of the ABLE Act, issued the following statement after the CDC announced one in sixty-eight children have been identified as having autism spectrum disorder - a 30% increase from a 2012 CDC estimate. Go to for specifics on the statistics. "The increase in the prevalence of autism in children announced by the CDC further underscores the need for Congress to take up and pass the ABLE Act to provide individuals with disabilities with the financial planning tools they need and deserve.

Thursday, March 27, 2014

man charged with stealing from Down Syndrome charity

from NBC 11:
Authorities have issued an arrest warrant for the former head of a support group for those living with down syndrome.
Randy Burkhaulter is charged with stealing from the group "Better Understanding of Down Syndrome" or BUDS.
A Lubbock County Grand Jury indicted him on the charge Tuesday, and authorities signed the warrant on Wednesday.
According to the indictment, the theft occurred between April 2011 and October 2012.
Burkhaulter served as BUDS' president during that time.
The group's board of directors released a statement to us claiming that Burkhaulter admitted the theft to their attorney, saying "We are pressing charges on Randy Burkhaulter as a Board and on behalf of members of BUDS and all of our donors who have so generously given funds to BUDS."
They say a review found nearly $15,000 unaccounted for.
Burkhaulter has not yet been arrested, according to county jail records.

Wednesday, March 26, 2014

Legoland hosts Down Syndrome Association of Central Florida


from Bay News 9:
Children from the Down Syndrome Association of Central Florida and their families visited Legoland Florida Tuesday.
Merlin Entertainment Group’s charity, Merlin’s Magic Wand, provided the all expenses paid adventure.
The charity gives ill, disabled or disadvantaged children the opportunity to visit Merlin Entertainment attractions around the world and works with local organizations to create memorable experiences.
The event was part of a special global initiative to celebrate the opening of Merlin’s 100th attraction this year, with DSACF members joined by thousands of others across the 22 countries in which Merlin operates.
Based locally in Winter Park, DSCAF serves families in an 11+ county area and serves as a leading voice for individuals with Down syndrome and their families.  The Association consists of over 1,200 individuals with Down Syndrome and their families.

Tuesday, March 25, 2014

Former Don Bosco football player Divitto inspired by sister

by Jeff Roberts from The Record:
The voice on the other end of the phone kept him going.
Every night Steele Divitto made the call, sitting in someone else’s house, lounging on someone else’s bed.
The former Don Bosco linebacker spent the winter back in New Jersey, chasing his dream of reaching the NFL. His two-a-day training sessions for Boston College’s March pro day had him run all morning. Lift in the afternoon. Squeeze physical therapy in between. And then he would return to the gym at 8 or 9 p.m. for one-on-one workouts.
But at the end of each grueling day, Divitto knew his older sister, Collette, was waiting to hear from him. She was born with Down syndrome, but never allows it to stop her from doing anything. So Divitto cannot allow anything to stop him.
"She’s a huge inspiration," he said. "She’s one of the most amazing people in my life. I’m so blessed to have her. I’m her biggest fan. She’s my biggest fan.
"At the end of the day, I do it for her."

Monday, March 24, 2014

help develop the theme for NDEAM 2014!

DOL Seal: U.S. Department of Labor
Join the Conversation to Help Develop the Theme for NDEAM 2014
March 24 — March 31, 2014
Submit creative ideas to help promote the employment of people with disabilities
Have an idea for this year's National Disability Employment Awareness Month (NDEAM) theme? The U.S. Department of Labor's Office of Disability Employment Policy (ODEP) wants to hear from you!
You are invited to participate in a national online dialogue being held from March 24 through March 31 to gather ideas for this year’s NDEAM theme. Held each October, NDEAM raises awareness about disability employment issues and celebrates the many and varied contributions of America's workers with disabilities. Ideas received will assist in developing an overall theme to be incorporated into NDEAM activities and events nationwide.

Sunday, March 23, 2014

The Down Syndrome Research and Treatment Foundation Changes Its Name to Celebrate Its First Decade of Breakthroughs

from PRWeb:
In conjunction with its tenth anniversary, the Down Syndrome Research and Treatment Foundation (DSRTF), the nation’s leader in accelerating research towards improving learning, memory, and speech for people with Down syndrome, announces its new identity as the LuMind Foundation, and celebrates World Down Syndrome Day with a match: donations will earn 3:1 on March 21.
To reflect the awareness and focus DSRTF has brought to the field of Ds cognition research, the organization will now be known as the LuMind Foundation. The name has its origin in the words lumen, a measure of light, and mind. “We’re proud to be shining light on the powerful potential of cognition research,” says Carolyn Cronin, Executive Director of the LuMind Foundation, contextualizing the new name. “Our continuing mission is to make a brighter future possible for people with Ds, to enhance their learning, and to delay or halt the cognitive decline they experience at an earlier age — in a word, to illuminate. We’re excited to move forward with an identity that underscores our values.”

Saturday, March 22, 2014

Inclusion plan struck down by school board

by Michelle Provencher from WDEL 1150AM:
Special needs schools will remain open for now, after the Red Clay School Board rejects motions for their closure.
Measures to transition students with special needs to primary public schools fail without even a vote, when the Red Clay School Board wouldn't second the motion.
The one board member who supported the action was Catherine Thompson.
"Without a doubt, hands down, the best research right now says that inclusion is the only way to go for these students," Thompson says. "It really is the last frontier for civil rights, it really is."
Following suit with Thompson is Hazel Cole, director of the Down Syndrome Association of Delaware and parent of special needs children.
Cole calls Meadowood essentially a "babysitter," and realized her daughter, Grace, wasn't reaching her potential there when she was in 2nd grade.
"The issue is that she was by then so far behind that she really can't keep up with her peers. You know, her compared to other students in other districts who are thriving and they started in a fully inclusive setting," Cole says.
Gene Seidle, however, says his 7th grade son was being bullied at his old school but is now flourishing at Central.
"Moving into Central has taken that fear and anxiety off, so he now can concentrate on his time. A school with a thousand children, for some children, is just too much. It's too much stimulation. And he has Aspergers, he's stimulated, he hears everything. And so he's concerned about what's going on around him," Seidle says.
Lisa Hazeldine was among one of the many dressed in red, in opposition to closing special needs schools in the district.
Hazeldine's son, Edward, has Duchenne muscular dystrophy and attends Richardson Park Learning Center. She says they visited Skyline Middle School, but it isn't an option for them.
"It's a good school, it's just not for my son," Hazeldine says. "He was stuck in the bathroom. He used the bathroom and the door was too heavy for him to open. That's not safe."
Motions to merge English Language Learners with general classes were made by Thompson and seconded by Kenneth Rivera. The four other board members voted against the measure and it was killed.
After the items were struck down, the board agreed to work with parents to find a better way to de-segregate schools.
Superintendent Merv Daugherty says there's room for improvement.
"Sometimes plans are tough to do, and until you put it out there, you really don't see all the areas that you need to improve in. So I'm encouraged that we can do it," Daugherty says.

Friday, March 21, 2014

World Down Syndrome Day!

21 March 2014 marks the 9th anniversary of World Down Syndrome Day and each year the voice of people with Down syndrome, and those who live and work with them, grows louder. But there is still so much more we can do.
Down Syndrome International encourages our friends all over the world to choose your own activities and events to help raise awareness of what Down syndrome is, what it means to have Down syndrome, and how people with Down syndrome play a vital role in our lives and communities. We will share your WDSD World Events on our dedicated WDSD website in a single global meeting place.
For WDSD 2014, DSi is focusing on:

“Health and Wellbeing - Access and Equality for All”

All people with Down syndrome have the right to access healthcare when required on an equal basis with others without discrimination and with proper assessment of the specific health needs of the individual. We will be highlighting that:
  1. Having Down syndrome does not make a person unhealthy.
  2. Down syndrome is a genetic condition, not an illness.
  3. People with Down syndrome may have health issues throughout their lives, just like everyone else and they should have access to healthcare on an equal basis with others.
  4. There are specific known health issues which may affect people with Down syndrome, for which accurate, evidence based information is available.
  5. Health professionals should be aware of these specific issues when treating a person with Down syndrome.
  6. Health professionals should not discriminate against people with Down syndrome by:
  • refusing to treat them;
  • blaming health issues on Down syndrome in general, or;
  • considering only specific known health issues which may affect people with Down syndrome.
Our WDSD Global Video Event and WDSD Conference will both explore this important area of focus.
If you would like to join this campaign, then we very much welcome its adoption into your plans for WDSD 2014.

Once again in 2014, we are inviting everyone across the world to wear LOTS OF SOCKS on 21 March to get people talking about WDSD.
You can also participate in our WDSD activities by nominating someone for the WDSD Awards, you can join us on our various WDSD Social Media channels, and you can promote our WDSD Patrons Messages.

Whatever you plan to do, lets create a single global voice for advocating for the rights, inclusion and well being of people with Down syndrome on 21 March.

Additional materials for WDSD 2014:
WDSD 2014 - General Poster - 2014 (print ready versions of this are available in A3 and A4 paper sizes)
WDSD 2014 - Health Poster - 2014 (print ready versions of this are available in A3 and A4 paper sizes)

Thursday, March 20, 2014

Five Babies A Day Abandoned At Chinese City's 'Baby Hatch,' More Than 260 Unwanted Children Over Six Weeks

by Rida Ahmed from
In just over six weeks, more than 260 unwanted children, most of them babies, have been abandoned in a Chinese "safe haven"-more than five a day-since it opened in late January, authorities said.
The "baby hatch" in Guangzhou, in the southern province of Guangdong, was suspended on Sunday after the city's welfare home exceeded its capacity to handle new arrivals, Agence France-Presse reported.
With 67 percent of the babies being less than a year old, all of those abandoned also suffered from illnesses including cerebral palsy, Down syndrome and congenital heart disease, the Bureau of Civil Affairs of Guangzhou Municipality said.
The facility was set up in late January and 262 children had been abandoned at it by Sunday morning, it said in a statement, according to AFP.
The 1,000-bed welfare home was housing 1,121 residents, with another 1,274 being cared for by foster families, the statement issued Sunday said.
Its quarantine facilities were "not enough to meet the demand" and wards that had previously held 50 children were now caring for 80 to 100, it added.

Wednesday, March 19, 2014

Close family, who died within days of each other, will have joint funeral

by Kevin Allenspach from
Funerals are a difficult time for any family. Friday could be specially taxing for Kim Butkowski and her three brothers.
Their sister, Sandy Schulte, died last Friday at 57 after a long illness. Less than 24 hours later, their mother, 76-year-old Sharon Schulte, succumbed to complications from lung and brain cancer. And on Tuesday, their father, 77-year-old Thomas Schulte also died after a stay at Quiet Oaks Hospice Home.
A joint funeral is scheduled for 11 a.m. Friday at Williams Dingmann Family Funeral Home in St. Cloud.
“Sandy was born with Down syndrome,” said Butkowski, 56. “She was the oldest of us kids and my mom and dad promised they were going to keep her at home with them as long as they could. She functioned at the level of a 4-year-old ... Sandy’s health had deteriorated the last couple of years and she got real weak. She had trouble walking and was to the point where she couldn’t feed herself. I think she aged very rapidly...

Tuesday, March 18, 2014

15 people with Down syndrome help pregnant mom

from Raquel Villanueva from 9News NBC KUSA:

On February 9, an expecting mother who had just learned her child would be born with Down syndrome reached out to an Italian nonprofit.
"I'm scared: What kind of life will my child have?" the worried mother asked the Coordown organization in an email.
To help answer her question, Coordown teamed up with Saatchi & Saatchiad agency. Together, they interviewed 15 people with Down syndrome from different countries across Europe.
They released the responses on YouTube, in honor of World Down Syndrome Day, which is March 21.
The sweet answers reassure the expecting mother that her future son will "be able to hug" her and that they will one day grow up and have a job and other responsibilities.
"Sometimes it will be difficult," they caution. "Very difficult. Almost impossible."
But then ask "isn't it like that for all mothers?"

Monday, March 17, 2014

Shifting the Perspective on Disabilities

by Christie Taylor from The Huffington Post:
If I was asked the question, "Was receiving the news your son had Down syndrome a life changer for you?" my answer would be yes, but that wouldn't be entirely accurate.
It's easy to look at a one big, notable experience and say that event changed my life. Yet, when I take some time to ponder my life changing moments, they are not big and notable, but small and simple.
These small and simple moments have come in the form of a joke, a laugh, or a smile. Though the moment was a brief sliver in time, it served as a pivot point, causing a shift in perspective. An internal shift in perspective has the power to change everything.
When my son, Wil, started kindergarten, he began having certain behavior problems. Kindergarten was overwhelming for him, and when he was tired or didn't want to do something, he responded by crawling under a table or plopping himself unmoving on the floor.
This behavior was affecting his learning, and was starting to disrupt the class. Though his assigned teacher's aide and I tried many different approaches, nothing had a lasting effect.
Over time, I worked myself into a high state of stress over these behaviors. I didn't know what to do and felt at a loss. In desperation, I talked to a friend from our Down syndrome support group about this situation. Her son is a few years older than Wil, and I hoped she would have some ideas on how to help him.
As I described Wil's kindergarten story to her, a big, calm, knowing smile spread across her face. She put her hand gently on my shoulder and said, "My son did that all the time! Don't worry! He'll outgrow it. This is what we did..."
Surprisingly, I found myself laughing with her about all the things I had only moments ago been feeling distressed over. This was a pivot point for me. My friend's knowing smile and shared story completely changed my perspective of the situation.

Sunday, March 16, 2014

Is it ok to date someone with Down syndrome?

  • I dont mean socially i could give a crap less about if someone doesnt think its cool. I mean is it like healthy? I dont understand down syndrome too too much besides they act a like... Well off. Is it even safe? Like could the emotions that come with a relationship be dangerous because i know some cases they have distrorted sense of right and wrong. And if they broke up? For unseen reasons could that emotionsl toll be deadly
    If not dangerous?
Answer: I have two children with Down Syndrome and I assure you that they will date and also hopefully get married! They are caring and loving and also able to take care of them selves. If they had a breakup they would be sad just like anyone else. Time heals just the same. Having children if you were to marry is an issue you will have to address. Also since individuals with Down Syndrome take longer to grasp things you will need patience. See our site to see videos of these great heros. They own businesses. Go to college and so much more

Portrait of a community hero

When Lisa Maloney read the criteria for the Canadian Down Syndrome Heroes award, she knew someone who fit the bill exactly: Kevin York.
“Kevin meets all of the requirements to be a hero in our community,” said Maloney, the volunteer co-ordinator with Community Living Huronia (CLH). “He certainly is a great role model for members of our community, his peers, and family members that have a child or siblings that have Down syndrome.”
The genetic disorder is caused by the presence of a third copy of chromosome 21. It is typically associated with physical growth delays and some intellectually disability.
Maloney said York “is the perfect example that people with exceptionalities have skills and abilities to give to the community.”
The long list of organizations and activities for which the Midland resident volunteers includes CLH’s charity golf tournament, the Salvation Army kettle drive, the Rotary Club’s Party on the Dock, and many others.
Maloney said York is particularly effective pounding the pavement to collect prizes and sponsorships for the golf tournament.
Cathy York said she can’t remember exactly when her son started volunteering, likely with CLH, but it has since become a key part of his life.
“I have said to him it’s good to do things for others, because a lot of people do things for him, but he just ran with it. Kevin loves it. He likes to meet people and he loves the social part of volunteering.”
Previously, York never went anywhere without his mom, but now he goes to the mall, the movies and Tim Hortons on his own. After discussing options with his mom, he later finds his own way home from his many activities.
“His friendship list is miles long,” Cathy York said. “I don’t worry. Everyone knows him and he has a friend on every corner.”
Indeed, in the nomination package for the award, Doug Andrews wrote: “Walking down main street in Midland, you think you are with the ‘King of Kensington.’ (Kevin) is respected and known by community members from all walks of life.”
Cathy York said she was surprised to learn of the nomination, and while she is frequently told how much her son is appreciated, it was wonderful to read all the nice things people had to say about him.
Winners will be announced later this week in time for World Down Syndrome Day on March 21.

Saturday, March 15, 2014

March is Developmental Disabilities Awareness Month

by Alan Bullock from The Jefferson Post:
March is “Developmental Disabilities Awareness Month” and Jessica Roland, Patricia Calloway and Shari Rognstad are just a few of those in Ashe County who are raising awareness and making a difference in the lives of those living with developmental disabilities.

“Ashe County, like every other county, has a need for services for people with disabilities,” Rognstad, executive director for Summit Support Services of Ashe, Inc., said.

“Ability to Work”

The N.C. Council on Developmental Disabilities (NCCDD) and other related organizations celebrate “Developmental Disabilities Awareness Month” each March ever since former President Ronald Reagan signed the first proclamation in 1987.

According to the National Institutes of Health, developmental disabilities are defined as long-term problems that affect physical and/or mental functions. Autism, Down Syndrome and certain learning disorders are a few examples.

“During ‘Developmental Disabilities Awareness Month’, we encourage people to learn more about the 172,000 people in N.C. who have developmental disabilities and to recognize that all of us have talents and abilities that we can offer in our workplaces and communities that make this a better place to live,” Chair of the NCCDD Ron Reeve said.

This year’s theme is “Ability at Work.”

Friday, March 14, 2014

Understanding Down syndrome – are we doing the right research?

by Sue Buckley from her blog at
I recently had the honour of being invited to be a discussant at a symposium on Language, Reading and School Readiness in Down syndrome at the Gatlinburg conference on Research and Theory in Intellectual and Developmental disabilities (see for program and abstracts). As my remarks were well received I decided to write them up for my blog and perhaps encourage some discussion. There were a number of interesting papers relevant to understanding learning and development in children with Down syndrome during the meeting and as I listened a number of questions emerged for me.
1. How relevant are ‘typical’ models of development?
For example, in trying to understand the challenges that face children with Down syndrome as they learn to read studies frequently compare the way that they learn and use component skills with ‘typically developing’ children matched for word reading ability. One repeated finding is that the children with Down syndrome are ‘behind’ in their understanding and use of phonics – the ability to sound out letters and blend them when faced with an unfamiliar word. However, they are often competent at reading exception words – using visual sight word learning strengths. I think we need to be cautious in the way we interpret these results – as there may be different ways to achieve an endpoint. Given the incidence of hearing impairments in early years and the difficulties of developing clear speech, we should not be surprised that children with Down syndrome are not well set up to hear or manipulate sounds in words in an aural mode as they begin to learn to read and rely more heavily on the visual route to word identification than the phonological recoding one. In my experience, by the time children with Down syndrome have word reading ages of about 8 years, they do begin to be able to sound out words to read them and to spell and they are helped in this by the visual representation of the sounds in letters and by building words with plastic letters i.e. they go from the visual to the phonological as they are exposed to activities with letters and printed words. I am using this example to caution against the view that the only or even the best way for children with a disability to learn to do something is the way most other children do it. It may be more productive to recognise that there are different ways to reach an endpoint and to actually encourage children to use their strengths and build skills in a different order.

Thursday, March 13, 2014

mom booked with fatal poisoning of her 17-month-old son

A Belle Chasse woman has been booked with killing her 17-month-old son, injecting the hand sanitizer Germ-X into the body of a toddler who was born with Down syndrome and a heart defect. Lucas Ruiz died Jan. 24 from alcohol poisoning, in what his mother, Erika Wigstrom, 20, described to detectives as a mercy killing.

The official cause of death is "acute ethanol intoxication," according to the Plaquemines Parish Sheriff's Office. The active ingredient in Germ-X is ethyl alcohol, the product's website says. Deputies arrested Wigstrom on Tuesday after she confessed to killing the child because she didn't want him to suffer anymore, authorities said. The family had written in his obituary that Lucas died "while cradled in the arms of his beloved mother."
She also confessed that she previously gave the child perfume, a crime with which her former boyfriend and Lucas' father, Cesar Ruiz, already is charged, according to the Sheriff's Office.
"From what I gathered from the detectives, they basically said she had no remorse," said Cmdr. Eric Becnel, a Sheriff's Office spokesman.

Wednesday, March 12, 2014

Intellectually Disabled Get a Say in Drug Trials

from WSJ Live:
New drug trials for disorders like Down syndrome and Fragile X are presenting researchers with a dilemma: how to make sure people with intellectual disabilities consent to join. Amy Dockser Marcus and Massachusetts General Hospital's Brian Skotko discuss.

Tuesday, March 11, 2014

Group dispels Down syndrome myths

by Kelly Bothum from the News Journal / Delaware Online:
Like many girls her age, 7-year-old Kayla Kosmalski is rarely at a loss for words.
So when she meets someone for the first time, she's got plenty to say. She might talk about what she's learning in her second-grade class at Cedar Lane Elementary School near Middletown. She might show off a new move learned in her hip-hop class or strum a few chords on her guitar.
Or she might tell you that she was born with Down syndrome, a genetic condition that occurs when a person is born with a full or partial extra copy of chromosome 21.
Years ago, that diagnosis could have meant a life with diluted expectations, little social interaction and limited educational opportunities.
But that's not been the case for Kayla, who learns in a classroom that includes those with disabilities as well as those without them. She takes dance classes and swim lessons with typically abled peers and friends who see Kayla – her sunny personality, radiant good looks and loving heart – rather than an extra chromosome.
It's the kind of life Kayla's parents, Rick and Amy Kosmalski, have worked hard to give their daughter. And it's what pushes them to advocate on behalf of other families raising children with disabilities. The Kosmalskis, along with eight other families, recently formed the 321foundation, a nonprofit organization whose mission is to advocate for people with Down syndrome and their loved ones.
"People today with Down syndrome are going to school with their peers. They're doing the same things as their peers. They may have more medical complications, like heart surgeries, but once you get past those medical symptoms that go along with it, they're driving cars, getting married, getting jobs," said Rick Kosmalski, Kayla's dad.
World Down Syndrome Day will be held March 21, a date intended to signify the uniqueness of having three 21st chromosomes, which leads to Down syndrome. Across the globe, people are encouraged to wear bold, mismatched socks with the hope that the fun footwear could inspire people to ask questions that lead to a discussion about Down syndrome.
"The only way to make something better is to get acceptance from people in the community. The only way to get acceptance is to have them understand it," Kosmalski said. "Knowledge leads to acceptance."

Monday, March 10, 2014

Boy With Down Syndrome Sinks a 3 With the Harlem Globetrotters

ABC Entertainment News | ABC Business News

by ABC News:
Another dream came true for a Pennsylvania teenager with Down syndrome when he took to the court with the world famous Harlem Globetrotters.
Kevin Grow, 18, of Bensalem, Pa., scored a three-pointer alongside the Globetrotters in front of a hometown crowd Sunday night at Philadelphia’s Wells Fargo Center.
Click HERE to Read More About Kevin
The three-point basket was especially poignant for Grow, who became a viral star last month thanks to a YouTube video that showed him sinking four three-point shots in the final two minutes of his high school’s senior night basketball game, leading the team to victory.
The video caught the eye of the Globetrotters who asked Grow, known by his teammates as KG3, to come play with his idols.
“He watches the Globetrotters religiously,” said his father Earl Grow.
“He’s always been a fan,” added his mother, Dorothy.
Grow hung out with the Globetrotters in the locker room before the game – performing some of the tricks they’re known for, like an under-the-leg dribble, right alongside them. But it’s not the first time he’s  hit the court with all-star basketball players.
Grow’s YouTube video also caught the eye of the Philadelphia 76ers who last month signed the high school player to a ceremonial two-day contract that gave him his own team locker, jersey and sneakers and a chance to warm up with the team and sit on the bench with the NBA team.
“Kids with special needs have a lot of abilities you don’t even know,” said Dorothy Grow.  “Don’t underestimate them.  Challenge them.”
“Make sure they can reach their full potential,” she said.

Sunday, March 9, 2014

Bangalorean’s docu-film makes it to world festival

By Shyama Krishna Kumar from The New Indian Express:
It is a proud moment for director Pavitra Chalam and her team as her film Indelible has made it to DocWeek 2014, a film festival to be held in Adelaide, Australia on March 6.
The team is currently in Australia promoting their feature length documentary. The story of seven people living with Down’s Syndrome, a genetic disorder caused by an extra chromosome that leads to developmental delays and mild to moderate intellectual disability, the 60 minute documentary is a testimony to their courage and indomitable spirit.
“In 2010 I made a film called Khushboo which dealt with children with complex needs. Making this film brought to fore the kind of injustice and ignorance all of us harbour against people with special needs. It’s something I’ve been quite passionate about and Down’s syndrome has also been ignored like almost everything else that comes within the same purview,” explains Pavitra Chalam.
The idea for the film finally materialised when Pavitra met the Director of the Down’s Syndrome Federation (DSF) of India in Chennai (where the film was also shot subsequently). It was here she realised that a lot had to be done if people’s perceptions needed to be changed and a more inclusive society had to be built. DSF went ahead and funded the film. “Most of the crew members worked for free on this film and the film happened because of the goodwill and help from a lot of people,” says Pavitra.
The shorter version of the film at 16 minutes was shown at the 11th World Down Syndrome Congress, that took place at Cape Town in 2012, on the final day of the conference. India pitched to organise the same conference in India and went ahead and won the pitch. The next World Down Syndrome Congress will take place in Chennai in 2015.
The documentary features the stories of Babli, Revathi, Arti, Manimeghalai, Archana, Sandhya, Ashwin, their families and how they face life on a daily basis. “I think what I learnt and what I was witness to was their spirit, their ability to love, see beyond barriers and to push outside barriers. They have so much to deal with - physically, intellectually and the way people perceive them as well. But they face all of it with so much dignity,” says Pavitra, who has previously directed Rooting for Roona, a film about a little girl suffering from hydrocephalus, a birth defect caused by a build-up of fluid in the brain leading to swelling of the head.
The short version of the film also won the ‘People’s Choice Award’ at the Delhi Shorts International Film Festival in 2012. It was also part of the ‘official selection’ of films at film festivals across the world such as the ‘Picture This Film Festival’ in Calgary, ‘The Thinline Film Festival’ in Texas, ‘The India International Film Festival of Tampa Bay’ in Florida and the ‘DocuWest Film Festival’. The feature version had its worldwide premiere at the Seattle South Asian Film Festival (Tasveer) in October last year and has since been doing the rounds of the film festival circuit.

Saturday, March 8, 2014

Morocco: HRH Prince Moulay Rachid, HSH Prince Albert II of Monaco Visit HRH Prince Moulay Rachid Down Syndrome Center

Rabat — HRH Prince Moulay Rachid and HSH Prince Albert II of Monaco paid a visit, Thursday in Rabat, to HRH Prince Moulay Rachid Center, which supports people with Down's syndrome from disadvantaged families.
On this occasion, HRH Prince Moulay Rachid and HSH Prince Albert II of Monaco toured the premises of the Center, and followed explanations on this structure, which is part of the National Initiative for Human Development (INDH) in the Rabat -Salé- Zemmour- Zaer region.
Inaugurated in June 2012 by HRH Prince Moulay Rachid, honorary president of the Moroccan Down Syndrome Association (AMSAT), this facility offers paramedical rehabilitation services, psychological support, and social, educational and vocational training.

Friday, March 7, 2014

How the proposed ABLE Act will help parents of children with disabilities

by Mari-jane Williams from The Washington Post:
Last week several hundred disability rights advocates were on Capitol Hill to support the Achieving a Better Life Experience Act. The current version of the bill was introduced in February 2013 and would allow individuals with disabilities or their families to open a tax-sheltered savings account to pay for certain long-term expenses.
Sara Wolff, a woman with Down Syndrome who has collected more than 200,000 signatures on in favor of the ABLE Act, was on Capitol Hill on Feb. 27 to rally support for the bill.
The accounts would be similar to the current 529 program that allows families to save for college education, and would be called 529A accounts, said Sara Hart Weir, the vice president of advocacy for the National Down Syndrome Society.
I spoke with Weir by phone this week about the ABLE Act. Here are edited excerpts from that conversation.
What would the ABLE Act do?
It’s basically amending Section 529 of the tax code to create a specific account for people with disabilities. In order to qualify for a lot of services, folks can only save $2,000 in assets and earn $700 a month. That’s way below the poverty line. The current law dates to 1974, and it was a way to qualify for Medicaid

Thursday, March 6, 2014

National Down Syndrome Society named 2014 Brand of the Year

Washington, D.C. (March 6, 2013).
The National Down Syndrome Society (NDSS) has been recognized as the Brand of the Year by Harris Poll EquiTrend.  EquiTrend is an annual study that started in 1989, yet awards have only been given to the top brands since 2011 and started the Disability Non-Profit category in 2012. The award is given out based on the Brand Equity Index which measures an organizations reach in Familiarity, Quality and Intention (intention to purchase/use/watch/own/donate). “NDSS is deeply honored to be recognized by the Harris Poll as the brand of the year in the Disability Non-Profit category,” said NDSS President Jon Colman.  “This award is truly a high compliment demonstrating to all of us at NDSS and the Down syndrome community that we are making strides towards fulfilling our mission to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.”

Wednesday, March 5, 2014

3rd World Down Syndrome Day Conference, 3/21 UN Headquarters NYC


We urge you to come along in person to the 2014 WDSD Conference to show your support and to help us to represent people with Down syndrome with a single global voice at the United Nations!

Down Syndrome International is delighted to announce that the 3rd World Down Syndrome Day Conference, based on the theme "Health and Wellbeing - Access and Equality for All" will take place at United Nations Headquarters in New York, USA on 21 March 2014 in the Economic and Social Council Chamber from 1.30pm-6pm.

Confirmed speakers include:

Dr William Mobley - United States - Distinguished Professor, Chair of the Department of Neurosciences and Executive Director of the Down Syndrome Center for Research and Treatment at UC San Diego and the Florence Riford Chair of Alzheimer Disease Research.

Dr Yvonne Maddox - United States - Deputy Director, National Institute of Child Health and Human Development at the National Institutes of Health and Chair of The Down Syndrome Consortium.

Dr George Capone - United States - Director of the Down Syndrome Clinic and Research Center (DSCRC) at Kennedy Krieger Institute and Member of Down Syndrome Medical Interest Group- USA.

Dr John Mayer - United States - Professor of Surgery, Harvard Medical School, Past Chair, Society of Thoracic Surgeons, Cardiac Surgeon, Boston Children’s Hospital.

Special Olympics/UNICEF - "Healthy Athletes" Health Screening and Intervention Program for Children with Intellectual and Developmental Disabilities.

Professor S Suresh - India - Chief Medical Director, MediScan Systems, Chennai, India.

Sheila Heslam - United Kingdom - Services Director, Down's Syndrome Association, presenting with self-advocate Sara Pickard on new Adult Health Book for people with Down syndrome to use with their medical practitioners, prepared in consultation with people with Down syndrome, their families and doctors.

Tuesday, March 4, 2014

Nine Out of Ten Mothers in Norway Choose Abortion for Down Syndrome Diagnosis

In 2012, 49 children were born with Down syndrome in Norway, the lowest figure ever recorded. 87 percent of women knowing that the fetus had Down syndrome chose to have an abortion.

New figures from the Medical Birth Registry (Medisinsk fødselsregister) show that 49 children were born with Down syndrome in 2012. This is the lowest figure since the birth registration has started to be applied in 1999, writes Dagsavisen.

According to the newspaper’s report, about nine out of ten pregnant women terminated their pregnancy, when they learned that the fetus had Down syndrome. The percentage has been between 80 and 90 percent for several years. As a result, 69 fetuses with Down were aborted in 2012.

Christian Democrat deputy Dagrun Eriksen found the trend as a strong signal of failing society, even though she emphasized that she does not criticize the individual’s choice to have abortion.

- First and foremost, we as politicians should criticize ourselves. The most important thing is that parents who give birth to disabled children should get the help they need, she says.

Monday, March 3, 2014

‘Clogged pipeline’ may explain Down syndrome leukemia

by Josh Barney-Virginia, University of Virginia from Futurity:
New insight into a mysterious form of leukemia that can appear and then disappear in children with Down syndrome could have implications for other forms of leukemia and even other diseases.
Researchers have linked a mutation causing Down syndrome-associated leukemias to abnormalities in cells that produce platelets, called megakaryocytes.
Essentially, this mutation is interfering with an enzyme, Calpain 2, that acts as an initial trigger for a chain of reactions that determines size and shape of megakaryocytes. This interference causes the normal process of cellular enlargement and platelet production to get hung up.
“It’s like there’s a long pipeline and there’s a clog,” says Adam N. Goldfarb of the department of pathology at the University of Virginia. “We think it’s this pipeline that’s getting clogged in this disease and other diseases.”
As reported in the journal Developmental Cell, leukemia cells with the mutation display a critical deficiency of Calpain 2, and the enzyme’s absence leaves them stuck in an early stage of development, contributing to the development of Down syndrome-associated leukemias, Goldfarb says. And that could be the case in other forms of leukemia as well.
“These leukemias in Down syndrome aren’t that common, but this finding has implications for other leukemias in that it lets us understand basic growth and development patterns,” Goldfarb says.

Sunday, March 2, 2014

Appeals court judge under fire for ordering new rape trial of woman with Down syndrome

by Bill Rankin and Steve Visser from the Atlanta Journal Constitution:
A state Court of Appeals judge has come under fire from Fayette County prosecutors for ordering a new trial for a man convicted of raping a woman with Down syndrome.
Judge Christopher McFadden overturned the jury’s guilty verdicts against William Jeffrey Dumas, who was convicted of repeatedly raping the 24-year-old woman on Oct. 18, 2010.
McFadden issued the ruling on a request for new trial after he had sentenced Dumas to 25 years in prison for the alleged assault. At the time, McFadden had been allowed to take leave of his appellate court duties and preside temporarily as a Superior Court judge in Fayette County.
Fayette County District Attorney Scott Ballard, who prosecuted the case, said Wednesday he received the news of McFadden’s order with “disgust.”
“I had to go visit the Down syndrome woman who was the victim of the rape and tell her that even though a jury had convicted her assailant of the crime, the judge was giving the guy a new trial,” Ballard said. “Her parents were, as you can image, outraged. … I just hope we can get some justice.”

Saturday, March 1, 2014

Boise cheerleader with Down syndrome inspires teammates

by Ashley M. Williams from USA Today:
Rachel Massingale, a cheerleader for Centennial High School in Boise, is doing more than just firing up crowds -- she's inspiring them.
Rachel, who has Down syndrome, has proved to all those around her what's possible when you're determined to reach your goals. Cheerleading coach Melissa Casey says not only has she been able to learn 52 cheers, but she "has even added her own little spirit to them."
Her teammates praise her for her incredible passion and the joy that she brings to everyone .
"I am very inspired by Rachel; I think she's taught us all a lot," teammate Mika Muta told KTVB. "She always gives 100%."