Wednesday, April 30, 2014

Sprout Film Festival: Growing Awareness

by Ashley Miller from Boise Weekly:
Nicole Lang says she's isn't too picky about what kind of movies she sees, but she definitely has a type. Her favorite film is something she saw two years ago that you have probably never heard of.
"It was called Be My Brother," she told Boise Weekly. "We showed it the first or second year of the Sprout Film Festival. And we're screening it again this year. It's really touching. ... It's incredible."
Lang doesn't program film festivals for a living, not by a long shot. She's the program director of Boise-based nonprofit The Arc, which has provided therapy, care and training for thousands of individuals with disabilities since 1956. But for the past few weeks, much of Lang's energy has been focused on the Sprout Film Festival and movies--movies that she said will make just about any audience laugh a little, cry a little and most importantly, see the world differently.

Tuesday, April 29, 2014

How to talk to your child about people with disabilities

by Mary-Jane Williams from the Washington Post:
Growing up, I was never really exposed to children who had disabilities. The kids in my elementary school in the 1970s who had Down syndrome, autism or cerebral palsy were in a separate classroom, and we rarely saw them. And while I remember very clearly my parents talking about race, religion and sexuality, we never talked much about disabilities.
Sure, we were told that it wasn’t polite to stare, or ask a lot of questions. But that was the extent of the conversations.
We’ve come a long way. Now, many children with intellectual or developmental disabilities are in the same public school classrooms as their typically developing peers, for part, if not all, of the day. There are entire months set aside for autism and Down syndrome awareness, and plenty of blogs out there about parenting a child with disabilities. It’s become part of the mainstream.
But because we didn’t grow up with a lot of exposure to people with different abilities, many parents today struggle with how to talk to their kids about disabilities, according to Michelle Sie Whitten, the executive director of the Global Down Syndrome Foundation.

Monday, April 28, 2014

Timberline baseball senior with Down syndrome stepping up to the plate

by Trevor Phibbs from Varisy Extra and
The final school bell chimes in mid-afternoon at Timberline High, signaling time to begin preparation for another baseball practice. Players act as groundskeepers andscatter across the diamond with rakes and garden hoses.
Senior Eddie Gordon can hardly wait to get started. Baseball has been on his brain from the moment he woke. Sprinting up the walkway, his excitement is pulsating; time is of the essence when it comes to practice.
Seconds from the gate, his eagerness combusts. "WASSUP?" he spouts from beyond the bordering chain-linked fence, waving his arms frantically. The team responds harmoniously, mimicking the famous Budweiser commercial.
Gordon's smile permeates across the field. This is the life. He's been an integral member of the Timberline program for the past two seasons, contributing as the batboy and serving as the team's unofficial moral deputy.
Born with Down syndrome, the opportunity to be one of the guys has meant the world.
But Monday night, his usual duties will take a back seat when he becomes a varsity player. After making an agreement with Centennial, Timberline coach Larry Price will pencil Gordon's name in the leadoff position to ceremoniously open Senior Night with an intentional walk.
Because for everyone involved in the program, Eddie has meant the world.

Wednesday, April 16, 2014

Dancing away differences: Event draws awareness to Down Syndrome, other disabilities

by Mike Landis and Robin Yancey from KY3:
Shuffling their feet to the beat, kids (and kids at heart) demonstrated their dance moves.
“The kids- they are dancers. I mean, that is the one thing that everybody always says about individuals with Down Syndrome…they can boogie,’ exclaimed Gretchen Miekley, Executive Director of Down Syndrome Group of the Ozarks.  The organization hosted a special ‘Spring Fling’ dance Friday night for individuals and families affected by Down Syndrome and other disabilities.
Down Syndrome, a developmental disorder, creates special hurdles for those like Khia Grey.
“I like going out and having a fun time with my friends,” she stated.
The event was a chance people with disabilities to forget about their challenges, and instead concentrate on being a kid.

Tuesday, April 15, 2014

Clarissa Serna Surprises Children On World Down Syndrome Day

by Caroline Flores from NBC 6:
CORPUS CHRISTI - The kiddos with Special Needs at The Rise School got a special surprise on World Down Syndrome Day. Local singer and "The Voice" contestant Clarissa Serna stopped by to have some musical one-on-one time with the children.
The rise school is a school for toddlers and preschoolers who have developmental disabilities. The children attending the school have disabilities ranging from Autism to Down Syndrome.
On this special day the children sang, danced, and made some beautiful music with Serna.
Serna has worked with The Rise School in the past performing at fundraisers for them. She says these children and this school have a special place in her heart.
"I used to babysit a child with Down Syndrome and he was just so amazing. They're really, really smart very beautiful children," said Serna.
The Executive Director of the school says to have Serna singing with the children is special... Because no matter what the is the one thing they all connect to and love.
"To have this experience with the kids, we'll never forget it. It's going to be a memory we will always have," said Andrea Elizondo The Rise School Executive Director.

Monday, April 14, 2014

DSR Episode #26: 321Foundation & IEPs!

Just a catchup episode here to keep you up to date.
First we did a quick wrap up on World Down Syndrome Day (March 21).  Then we jumped into the newest and coolest Ds Organization – the 321Foundation.  This new organization was started by a group of families in Delaware – One of which was our very own Rick Kosmalski!  Go Rick and friends!  Check them out at their site and go and like them on Facebook.  Check out the pictures of their kickoff gala on WDSD and while you are there, buy a T-shirt!

Then we simply gave a ‘kid by kid’ update on the IEP process.
  • Dexter (~3yrs) is just entering the school system.  Jason had their IEP but they are already in a private preschool and getting some private therapy so it was pretty low key.
  • Luke (5 yrs) is ready to go to Kindergarten.  Mark is worried about inclusion and the fact that there is only one teacher for ~25 kids. Luke will likely need some in-class support (an aide).  When you want more than they are willing to give – that is when IEP meetings are tense.  Our plan – bring food! (we actually give more advice in the episode – you should listen…)
  • Kayla (7 yrs) is in second grade – To Rick, the whole thing is dependent on the teacher – a good teacher means Kayla will have good year.  At this point the IEP is really a update from the previous year with improvements based on lessons learned.
Here are some lessons learned:
  • In general as husbands, we take on the role of ‘bad cop.’
  • It is best to ‘go in with a plan’ – in other words, know what services you want in advance.
  • The teacher is crucial.
  • If you feel that the situation/services set up is not working for your child, intervene IMMEDIATELY.  A ‘wait and see’ or ‘just give it a few months’ is just a bad idea.  You can quickly miss a half a year this way…
If you are looking for a good cause, our first ever DSR guest from waaay back in Episode 3, Dan Moreno, is running a 50K (that’s 31 miles!) in the mountains and desert(!) this weekend.  Show him some love and donate a few bucks to support Research Down Syndrome.
Sorry we haven’t had an episode in a while.  We have two great guests lined up, but we have had bad luck coordinating schedules.  We will keep the episodes coming – don’t worry…
Download Down Syndrome Radio, Episode #26.
Better yet…subscribe, rate us and leave a comment on iTunes!

Sunday, April 13, 2014

Easter Seals, Colquitt Regional Medical Center unite to provide jobs

from The Moultrie Observer:
MOULTRIE — Joel Reeves has a job. For most people, that’s not unusual, but for the 23-year-old with Down syndrome it’s a very big deal indeed.

Reeves is one of two people recently hired by Colquitt Regional Medical Center with the assistance of Easter Seals job coaches. Three others are in the Community Work Adjustment program with the goal of being ready to hire by the end of August.

Reeves works in an office behind the emergency room, where he’s helping the hospital become paperless, according to a press release from Easter Seals Southern Georgia.

“When Joel graduated from high school his dream was to work in an office setting and to live in his own apartment,” the press release said. “Both of his dreams have become a reality.”

Down syndrome makes Reeves move slow, so there was some concern that he wouldn’t be able to complete enough work, Easter Seals said. So, after two weeks of training, the hospital and Easter Seals conducted a time study, which found that Reeves completed as much work — and sometimes more — than other workers in the office in the same amount of time.

Saturday, April 12, 2014

UNCW, N.C. State to play in second annual ‘Harry’s Game’ to benefit TOPS Soccer

by Joe Catenacci from Port City Daily:
In an effort to bring awareness to Down syndrome and improve tolerance and understanding of children with special needs, the UNCW men’s soccer team will play in a charity match against the N.C. State Wolfpack on Saturday, April 12, at the UNCW Soccer Stadium.

“Harry’s Game” is set for a 7 p.m. kickoff, with proceeds going to TOPS Soccer. The program provides opportunities for kids with special needs and gives them a chance to play the “beautiful game.”
Nearly two years ago, Harry, the son of UNCW Coach Aidan Heaney, was born with Down syndrome. Heaney hasn’t missed a beat on the pitch and couldn’t think of a better to combine two of his loves, his family and the game of soccer.
“Harry has been such a blessing for our family. We knew early in the pregnancy he would be born with Down syndrome and, naturally, we were in shock. My wife and I did our research on what this would mean for Harry and our family. We continue to learn on how to be a parent with special needs,” Heaney said.
Heaney got the idea for the game from a colleague at Xavier, who also has a child with Down syndrome. After speaking with coaches at N.C. State at the end of this past season, they both agreed that this would be a great way to come together in support of a cause so close to home, Heaney said.
“It’s never something you think about when you start a family. Our son is a unique child, but I can tell you he wakes up with a smile on his face every morning and I’m sure he will teach me some things as he grows. Our hope is that he is able to enjoy opportunities that every child has. He has made our family unity closer,” Heaney said.
Tickets to Saturday’s friendly are $5 for adults, kids 15 and under and students are free. There will be plenty of activities for the kids, free food, drinks and face paiting.  There will also be a silent auction at the game for UNCW game jerseys in addition to N.C. State apparel.
“I hope the community comes out and supports the event, has a wonderful night. Our goal is to bring a smile to some faces and raise some money for TOPS Soccer,” Heaney said.

Friday, April 11, 2014

When it’s harder to lose weight

from Times of
World Down Syndrome Day, celebrated last month, promoted a healthier and active lifestyle. Rosette Gatt takes a look at how the physiological and behavioural aspects of this condition place these individuals at an increased risk of obesity.
Down syndrome, a genetic condition that causes delays in physical and intellectual development, occurs in one in every 800 live births and is not related to race, nationality, religion or social status.
The condition carries various health complications, but with appropriate medical care and an active lifestyle, most individuals can lead healthy lives. Nowadays the average life expectancy of individuals with Down syndrome is 55 years, with many living into their 60s and 70s.
Early childhood intervention, screening for medical problems, a sound and caring family environment, proper individualised education programmes and a supportive community can all improve the quality of life.
Unfortunately, recent research shows that between 30 and 50 per cent of children with Down syndrome are obese. Specific associated health and behavioural concerns in the individual with Down syndrome foster the development of obesity. A prevention and management plan thus needs to be mapped out for each individual to avoid negative consequences.
Weight gain in people with Down syndrome is a consequence of:
• physical characteristics, mainly short stature and hypotonic musculature also affecting ligaments, joints, hips, knees, pelvis and the spine;
• health concerns such as cardiac defects, thyroid function disorders, a decreased basal metabolic rate, gastro-intestinal tract anomalies, sleep apnea and sight defects;
• an inadequate diet because of dental problems, poor oral musculature and oral sensitivity;
• behavioural difficulties such as oppositional behaviour, impulsivity, negativity and non-compliance.

Thursday, April 10, 2014

Kuwait affirms keenness to care for people with Down syndrome

from Kuwait News Agency (KUNA):
A Kuwaiti official in the field of health and care for people with Down syndrome said on Thursday that Kuwait, with all its health, educational, and psychological institutions, is always keen to care for its citizens with Down syndrome, providing them with the best support which guarantees a better future for them.
Dr. Sadika Al-Awadi, Chairperson of Kuwait Down Syndrome Society, told KUNA that Kuwait was able to provide people with Down syndrome, of all ages, with medical, educational, rehabilitating, and entertaining services through the Society, indicating at the same time that some individuals with Down syndrome, who went through the Society's psychological and educational rehabilitation, showed remarkable perceptional and behavioral improvement as they also became dependent on themselves.

Wednesday, April 9, 2014

Popular town crier nominated for Pride of Bucks

THE man who was the UK’s first town crier with Down’s Syndrome has been nominated for a Pride of Bucks award.
William Ellis, 35, of Bois Moor Road, Chesham, recently stepped down from his position as Chesham town crier.
He hit national headlines when he was appointed in 2011. Before then, he spent a year as mayoral ambassador to Chesham’s town mayor.
Last month, he gave up the voluntary town crier role, with a presentation being held for him.
Mr Ellis was put forward for the award by Kathryn Graves, who is policy and projects officer for Chesham Town Council. “William has been an inspiring ambassador for Chesham and for people with learning difficulties, showing just what is possible,” she said.
“By having such a visible role in the community, William has given many residents the opportunity to meet someone with a learning disability and discover the positive contribution that they make to the town, something they may not otherwise have had the opportunity to do.

Tuesday, April 8, 2014

Working adults with Down Syndrome hardly get paid

A week after a new law aimed at protecting the rights of those with special needs was passed in the emirate, Rebecca Corley, founder of the All 4 Down Syndrome support group, tells SHARMILA DHAL the challenges those with Down Syndrome face and how the new law could change things for them.
Rebecca Corley, founder of the All 4 Down Syndrome support group talks about the challenges Down Syndrome patients face and how a new law could change things for them. Excerpts from an interview:

What are the main challenges facing children and adults with Down Syndrome in the UAE?
The main challenge is for parents to get children admitted into nurseries and schools as around 80 per cent of them are not inclusive. But high functioning children with Down Syndrome have a right to function in mainstream schools.

So where is the problem?
Most schools have long waiting lists and there are more and more kids who need learning support these days. In nearly nine out 10 times, children with Down Syndrome don’t get a chance because they need a full time shadow teacher/learning support assistant (LSA) which the parents must provide.

Monday, April 7, 2014

This Kind of Love

from the Huffington Post:
Two weeks ago, I got in my car to attend the meet-up organized by the International Down Syndrome Coalition (IDSC). I wore my "Love Doesn't Count Chromosomes" t-shirt, and so did every member of my family.
My 7-year-old asked, "Why does it say that?" I listened close as my oldest -- only 8 years old -- responded. "Some people think it's bad to have Down syndrome, but it's not. Having someone with Down syndrome in your family means that you have so much love, and we are so lucky to have this love."
I smiled. How strange to think I was initially sad when my daughter was born with Down syndrome!
How incredible that we were traveling to meet with other people who loved someone with Down syndrome. The gathering was purposed to celebrate their lives and to kick off World Down Syndrome Day. Indeed, we live with so much love.

Sunday, April 6, 2014

Kevin Kilbane pays respect to David Moyes for helping him cope with darkest days

by Henry Winter from the Telegraph:
When Elsie Kilbane was born with Down’s Syndrome in 2004, her father Kevin could not face going back to training at Everton. Kilbane and his then wife Laura had so many decisions to make over Elsie, so many hospital appointments to attend, so many fears to confront and learning to do.
Kilbane remembers clearly those difficult early days. Speaking on the eve of World Down Syndrome Day this Friday, one of the most respected footballers over the past two decades and now a popular BBC pundit, Kilbane is keen for other parents to absorb knowledge and ultimately encouragement from his experience.
“Elsie was born on a Monday night, so I didn’t go back into training, I just couldn’t,’’ recalled the 37-year-old. “Emotionally, I wasn’t in a great place. I spoke to David Moyes on the Tuesday and he said: ‘Look, take us much time as you want.’ It’s one of the reasons I respect David Moyes so much because of how wonderful he was with me at that time, knowing I was going through a difficult stage in my life.
“I went back in training on the Friday, the day before we played at Leicester and I wasn’t considered for the team. From the following week, I was back in normal training. David Moyes said some quiet words to me if he thought he needed to but he didn’t put me under any pressure. He’d known me since I was a lad of 16 (at Preston North End) and knew there was no need to make a fuss around me. He trusted me to look after myself.
“I couldn’t have wished to have been at a better, more caring club than Everton. Incredible. Lee Carsley is my best mate; he has a little lad with Down’s. Lee and I were always close. So when Elsie was born, to have that conversation with him was difficult for me. Lee was brilliant and he helped the other players out. Some were reluctant to talk to me. It is a difficult subject to broach. They knew I was very sad. They were going to Lee for advice on how they approached me. Lee said: ‘Just congratulate him. He’s had a little girl.’

Saturday, April 5, 2014

2014 TWENTYWONDER to Benefit Down Syndrome Association of Los Angeles, 6/28

from Broadway World:
Down Syndrome Association of Los Angeles (DSALA) announced today, in celebration of World Down Syndrome Day, that their annual benefit TWENTYWONDER, A Carnival of the Mind, will have its 5th Anniversary on Saturday, June 28, 2014 beginning at 6:00 p.m.
This year's TWENTYWONDER, marks the 4th year, that the L.A. Derby Dolls will host the critically-acclaimed, 21 and older fundraising event, at the Doll Factory (1910 West Temple Street) in Los Angeles. The evening will feature an all-star roller derby bout, music, comedy, art, sciences and plenty of last minute guest surprises. Proceeds will benefit DSALA's efforts to support those born with Trisomy 21/Down syndrome living in greater Los Angeles.
"WOW...I can hardly believe we are about to mount the 5th Annual TWENTYWONDER in Los Angeles! From it's funky/sweaty/adorable beginnings as SuperBall 'The One Day World's Fair' in 1996 to the fun-loving genre bending acceptance/awareness event hailed as today's Carnival of The Mind, this event is a genuine pleaser. TWENTYWONDER repeatedly draws and amazes the sweetest people of Los Angeles with a cultural cocktail shaken with the sights and sounds and ideas for our thirsty modern lives," said Jim Hodgson, Director of Down Syndrome Association of Los Angeles.

Friday, April 4, 2014

50 Countries Unite To Fight Medical Discrimination Against People With Down Syndrome

by Eleanor Goldberg from the Huffington Post:
3/21 marks World Down Syndrome Day, giving advocates the opportunity to celebrate the lives of people with the condition, and also to push for equal treatment in every area of life.
This year, the awareness campaign is focusing its efforts on urging countries worldwide to provide adequate health care to people with Down syndrome.
People with Down syndrome typically have an increased risk for some medical conditions, including congenital heart defects, respiratory and hearing problems and Alzheimer's disease, according to the National Down Syndrome Society. While many of these conditions are treatable, and people with Down syndrome can live long and healthy lives, they still face elements of discrimination that interfere with their treatment.
According to Down Syndrome International, people with Down syndrome are often denied or delayed access to health care. They sometimes receive incorrect diagnoses due to their physician’s lack of knowledge or inadequate training, and are often excluded from the treatment plan process and making medical decisions.

Thursday, April 3, 2014

Dallas Filmmaker Chris Dowling on Accidentally Writing a Movie About Down Syndrome

by Lauren Smart from The Dallas Observer The Mixmaster:
When Chris Dowling began writing his film Produce, he didn't know he was writing a film about down syndrome.
"I wanted to write a story about faith," he says. "And then as I was working on the film's narrative, I realized there had to be a character with this childlike faith and so I ended up writing a young man with down syndrome."
When I speak with Dowling, the Dallas native is rushing to get through the final stages of production on his second full-length film, which premieres at the Dallas International Film Festival at 5:45 p.m. Sunday, April 6 with a repeat screening Monday, April 7 at 1 p.m.
The movie follows Calvin, a professional baseball player forced into an early retirement in Kentucky, where he struggles to raise a teenage daughter. Like most films about washed-up sports players, Calvin hits rock bottom, which is when he meets a kid with Down syndrome nicknamed Produce, because he works at the local grocery store. The rest of the film, predictably, is about Calvin's redemption. What's not predictable about this film is that in role of Produce, Dowling chose to cast an actor with Down syndrome.
"Usually filmmakers cast someone to play Down syndrome, but as I began to research the disability, I didn't want to do the story an injustice. I didn't want it to feel contrived," Dowling says. "It might be the most lines an actor with Down syndrome has ever had in a film, but the only limitation that people with Down syndrome have are the ones we put on them."

Wednesday, April 2, 2014

People with Down syndrome are not costs to be avoided through prenatal testing

by Mark Leach from Down Syndrome Prenatal Testing:

I shouldn’t even have to say this.

The dinner
At last week’s American College of Medical Genetics & Genomics (ACMG) annual meeting, I was invited to attend a dinner hosted by one of the Non-Invasive Prenatal Screening (NIPS) laboratories. I was surprised to be on the guest list, and looked forward to enjoying a steak.
The room was packed–a far larger gathering than I was expecting. The other attendees were typical of those attending the ACMG meeting: medical geneticists, genetic counselors, and industry representatives.
The host company presented on their latest research. On how more conditions beyond aneuploidies may be added to the panel of conditions screened for and how a recent study suggested applying NIPS beyond high risk moms. It was what I expected, as far as the presentation went. Unfortunately, so was one of the last questions asked during Q&A.

The question
An attendee raised her hand and asked whether, given the higher cost of NIPS as compared to traditional screening, had the company shown that its test was “cost-effective.”
I saw red.
If you’re not familiar with that phrase, typically “cost-effective,” when associated with prenatal testing, means this:
  • Are the costs of offering NIPS to the 99+% of pregnant women not carrying a child with Down syndrome off-set by the number of those Down syndrome pregnancies that are identified … and aborted.
This is how the math is done: NIPS testing costs over $1,000 per test for all but one of the laboratories. Various studies have estimated that a life with Down syndrome costs a certain amount more to the healthcare system–the most recent number I saw was $350,000. So, a prenatal screen is “cost-effective” if 348 mothers not carrying a child with Down syndrome accept the test, costing $348,000, but the one pregnancy actually with a child with Down syndrome is identified and “avoided,” “prevented,” aborted.
Sitting there as undoubtedly the only attendee who had a child with Down syndrome, I felt my chest tighten.

Tuesday, April 1, 2014

321edcuate! Give & Get Back fundraiser from 321foundation!

The 321foundation is starting a fundraising campaign TODAY...321educate! ANYONE can set up a “team” online and start raising funds…or you can find your favorite team and donate today! The money you raise will go back to help empower individuals with Down syndrome and other intellectual disabilities through educational seminars, social events and advocacy efforts.

WHY RAISE MONEY AS A TEAM FOR 321FOUNDATION? It’s simple. It’s good to GIVE. Good karma just feels good… will also GET BACK in return. Not only will you feel good for giving, but you will earn prizes for giving, too. It’s a win-win!

FUNDRAISING TIERS FOR “TEAMS”$250…..321foundation tshirt
$500…..321foundation hoodie (and the first prize)
$1k…....original artwork by an individual with DS (and the first 2 prizes)
$2,500…$100 iTunes gift card (and the first 3 prizes)
$5k…….32GB iPad (and the first 4 prizes)
$7,500…$500 scholarship* (and the first 5 prizes)
$10k……$1,000 scholarship* (and the first 6 prizes)
*Scholarship/convention must be approved by the 321foundation board.

Our goal is to get an iPad and educational scholarship in the hands of as many individuals with Down syndrome or other intellectual disabilities as possible...but your team does not have to be created for an individual with a disability. You may also gift your prizes in your name to individuals that could greatly benefit from them. This fundraiser is not tied to any geographic location so whether you live in Delaware or South Dakota, you can establish a team and fundraise. Give and Get Back.

To set up your “team” go to and follow these easy steps…1. Scroll down on the right hand side of the page and click on “become a fundraiser”
2. At the bottom of the popup screen, click on “fundraise with an email”
3. Personalize with your info (the name you enter will be your fundraising name)
4. You will be redirected to a new screen which will allow you to personalize your fundraising page.
5. Share with your friends and start fundraising! It’s that simple!

Donations may also be directed via mail to:
PO Box 1128
Bear, DE 19701
Please be sure checks have your team/name listed in the note section.

This fundraising campaign will be open through midnight EST May 31, 2014. Donations will be accepted after that date but will not be prize eligible. Prizes will be mailed by July 1, 2014.