Saturday, August 31, 2013

UK Swimmer Laura bids for more medals at Special Olympics

by Yonnie McInnes from The Daily Record:
BEING born with Down Syndrome hasn’t stopped 19-year-old Laura Logan from achieving sporting success.
Laura, from Coylton, Souyth Ayrshire, has already lifted around 100 swimming medals and is aiming to win more.
For on Tuesday she left for Bath along with 217 Scotland West athletes to compete in the National Special Olympic Games on Sunday.
Laura is one of eight athletes, seven swimmers, one 10-pin bowler and three coaches from Ayrshire who are part of the Sports for Special Needs’ team; Laura is part of Kilmarnock Jets Swim Team.
Sports for Special Needs coach Joan O’Sullivan said: “Laura has been a member of our club since April 2007, she trains at the Galleon Centre in Kilmarnock every Tuesday evening and has been doing additional training at Drumchapel in Glasgow with the Scotland West Swim Team on the first Sunday of every month since being selected at the end of last year.
“All athletes who wish to be selected for the team apply, then they have to go through a compatibility test to see if they fit the criteria and trials.
“On the first round there were 70 applications for 40 places on the swim team, 22 males and 18 females to be selected. So it was an honour for all successful chosen athletes to gain a position to swim for the West of Scotland at the Special Olympics.”
Laura has achieved all this despite hearing problems that have meant a lot of operations, as well as a heart defect for which she needs a yearly check-up.

Friday, August 30, 2013

For Kids With Special Needs, More Places To Play

by Robert Benincasa from NPR:
Remember running around the playground when you were a kid? Maybe hanging from the monkey bars or seeing who could swing the highest?
It wasn't just a mindless energy burn. Many have called play the work of childhood. Play teaches children how to make friends, make rules and navigate relationships.
But for kids whose disabilities keep them from using playgrounds, those opportunities can be lost.
New federal requirements under the Americans with Disabilities Act are changing the landscape for public playgrounds, requiring them to include equipment, materials and designs that provide children with disabilities the same play opportunities as typical children.
But as NPR sought to explore the effects of the new rules, it found that parents and advocates are making the real difference — not the federal government.
The higher cost of "inclusive" playgrounds means many local governments can't afford them. And in places that do offer the kind of shared playing experience contemplated by the ADA, a group of frustrated parents is typically behind it all.

Thursday, August 29, 2013

Children with Down syndrome are trained up by fire crew

by Matthew Edwards from The Swindon Advertiser UK:
YOUNG people with Down syndrome have been finding out all about the emergency services as they put out fires, cut people out of cars and drove around with the blues and twos on.
A group of young people have taken part in the Salamander Project and spent the week with the Wiltshire Fire and Rescue Service to experience a basic fire and rescue training course.
The programme, held at Drove Road Fire Station, encourages participants to work as a team, while building up confidence and self-esteem.
Yesterday the group put on a display of their new-found skills for family, friends and senior fire officers which included cutting casualties out of cars and climbing ladders to save a woman from a burning building.
Sixteen-year-old Stephen Thomas was taking part in his fourth course and said that he had grown in confidence since he first started.
He said: “I have enjoyed the course because of all the different things we have done. My favourite part was at Coate Water where I was able to jump in the water.

Wednesday, August 28, 2013

Playgrounds For Everyone: A community-edited guide to accessible playgrounds

Accessible swing

from NPR:

A community-edited guide to accessible playgrounds. So far, we've identified 1,525. Help us find more!

On Your Smartphone: Visit

Why Accessible Playgrounds?

Because kids in wheelchairs can't play on playgrounds covered with wood chips. And children with muscular disabilities can fall out of swings that lack sides and backs. Or a child with vision or hearing problems can benefit from equipment specially designed for play alongside friends, siblings or any other child.

New federal requirements define playground accessibility as a civil right. And under those rules, playgrounds built or altered after March 14, 2012, are required to have wheelchair-friendly surfaces and equipment that helps kids with physical challenges move around.
Want to know more? Read our story.

You Can Help!

A comprehensive database of inclusive and accessible playgrounds does not yet exist, but you can help us create one.
  1. 1 Go to your playground. Does it have any of the features listed below?
  2. 2 Search to see if we have it listed. (See "Find An Accessible Playground" at the top of this page.)
  3. 3 Add your playground, or edit to add missing information.

Tuesday, August 27, 2013

A Mother and Her Child in the World of Down Syndrome in Nepal

by Michael Rosenkrantz from The Huffington Post:
Dr. Lalita Joshi, a retired Br .Gen. of Nepal Army Medical Corps with strict principals, simple and honest is driven by a deep love for her son Ashish, born some 22 years ago with Down Syndrome. She married Dr. Prabhu Joshi, an anesthesiologist, in 1980 and their first son, Amit, was born in 1981. Amit completed his MBA in the US and is now working for an investment company in Nepal. In 1989 Lalita became an OB-GYN.
In 1991 their second son Ashish was born. For 14 days Ashish was in NICU before he was able to come home. He possessed some facial features of a child with Down Syndrome and although the family suspected something, there were no real issues. When Ashish was three the family went to Madras for an elder sister's renal transplant. At that time Ashish was tested and it was confirmed that he had Down Syndrome. Fortunately for the Joshi's, Ashish has been accepted by all family members who refer to him as Lakshan Kobacha or lucky child.
The most common type of Down Syndrome is called Trisomy 21, which accounts for about 95% of people affected. Ashish has a less common type, known as Mosaic, which is a milder form of Down Syndrome enabling him to function at a much higher level.

Monday, August 26, 2013

St. X grad wants to smooth path for students with disabilities

If you’ve ever wondered where the leadership of the millennial generation will come from, look no further than Kyle Denman of Colerain, the 2013 YMCA of Greater Cincinnati Youth in City Government program’s mayor of Cincinnati.
The St. Xavier High School graduate recently made Ohio history at the YMCA Conference on National Affairs in Black Mountain, N.C., as only the second Ohioan to present a proposal in front of the 700-plus delegates and the third Ohio resident to be selected as a presiding officer.
Denman’s presentation was titled “Daniel’s Proposal,” and involved an amendment to the Individuals with Disabilities Education Act, designed to make school easier for students with disabilities.
His decision to work on this proposal resulted from a close friendship he has with a young man named Daniel from Anderson Township. Daniel has Down syndrome.
“I did this work to speak for those who cannot speak for themselves,” said Kyle. “I don’t see Daniel as having Down’syndrome, I see him as being downright awesome.”

Sunday, August 25, 2013

Lizzy Cundy talks to Alan Cumming, whose latest film is set to warm hearts

INSPIRED by a true story from the late 1970s concerning an abandonned teenager with Down syndrome taken on by a gay couple and their legal fight to keep him, Any Day Now isn't going to be packing in the masses when it opens around the country.
However, it's a powerful tale of love that touches on legal and social issues that are as relevant today as they were 35 years ago.

Saturday, August 24, 2013

Kids Fishing for a Cause

by Jessica Kiss form WJCL ABC and WTGS FOX:
POOLER, Ga.-  Kids Fishing For A Cause happens from 10 a.m. to 2 p.m. at Tom Triplett Community Park in Pooler on Saturday, August 24.
Tournament registrations get underway at 9:30 a.m.  The cost is $5/angler.
All proceeds go to the Lowcountry Down Syndrome Society, according to Sandy Roach.

Friday, August 23, 2013

Back to School: Make A Get To Know Me Book

by Amy Kosmalski from Particularly Perfect:

Well hello there my friends.  I am sorry to have left you hanging for a blog post since November.  Has it really been that long?  Eight months.  Really?  Wow.  Where has this year gone?  Right now I am I am making invitations for Logan's first birthday party {it is gonna be little man theme...think mustaches and bow ties and such...and a ridiculously cute one year old...but I will have to fill you in on Kayla's Beiber party first or I might get in trouble}.  I am also getting my big girl ready for second grade.  How is that possible?  A one year old and a second grader...I swear I never even had a chance to blink this year...

There is so much to catch you up on but that will have to wait for another day.  Today I am focused {and that never happens}.  Today I want to share Kayla's book with you.  This is something I have created every single year at this time to give to her new teachers.  I have created a book for Kayla since she crawled/cruised her way into Ms. Debbie's preschool class at the baby age of two.  Filled with fear and worry I wanted to ensure that everyone that came into contact with Kayla would get a small glimpse of her history but more importantly our expectations and hopes for that school year and her future.

Thursday, August 22, 2013

The link between Alzheimer's disease and Down syndrome

by Maureen Wallace from She Know's: Parenting:
Throughout my life, I've feared I would one day develop Alzheimer's disease. I never expected I'd have a child with Down syndrome whose chances of developing Alzheimer's (AD) surpassed mine.

Individuals with Down syndrome have increased risk of developing Alzheimer's disease and related dementia. The idea terrifies me. If I'm worried I won't be able to take care of myself in my old age, what makes me think I will be able to care for my son?
My 3-year-old son, Charlie, has Down syndrome (Ds), which means while most people have 46 chromosomes, he has 47 — thanks to a third copy of the 21st chromosome.
The 21st chromosome. Remember that.

Wednesday, August 21, 2013

Karrie Brown hopes to dance with Ellen Degeneres

from KSDK News Channel 5:
Karrie Brown's first day of school outfit went viral, resulting in not only thousands of fans but a photo shoot for a national clothing store.
The Collinsville High School Junior has Down syndrome and autism. A self-proclaimed fashion lover and aspiring model, Karrie's favorite store is Wet Seal. Her mother, Sue Brown, posted a picture of Karrie in her brand new threads on the first day of school August 12th and was flooded with responses about how great Karrie looked.

Soon enough, a family friend launched a Facebook Fan page displaying all of Karrie's daily school outfits.
Thousands of people liked the page and within a couple days Wet Seal was calling.
The retailer is flying Karrie out to California next week for a photo shoot.
Karrie is a teen who is constantly giving back to her community. She volunteers at her local YMCA and library branch. She also takes Zumba classes and Hip Hop classes because dancing is her favorite thing to do. Her love of dance has given birth to her ultimate dream -- dancing with Ellen Degeneres -- which has yet to be realized.

Tuesday, August 20, 2013

Woman With Down Syndrome Undergoes Painful Surgery On Feet In Order To Continue Dancing

from CBS Los Angeles:
A Van Nuys woman with Down syndrome is going through a painful surgical process on her feet in order to continue pursuing her passion of dancing.
Susie Schallert, 46, lights up on the dance floor.
“I’m a dancing fool. I am a lucky dancer. It is my dream to be in a show,” she said.
Susie, the youngest of 11 kids, is adored by her siblings.
“She’s taught me to be patient and kind. She’s taught me to go slow and not rush through life,” said Susie’s older sister, Patty.
In many ways, Susie was forced to go slow. As a teen, her feet stopped growing and bunions started reshaping her toes.
“They’re bad, they’re bad. She has toes on top of toes and bunions that look like golf balls on the sides, and the joints are gone. Can you imagine?” Patty said.
Susie’s mother, Mary, took her to the doctor.
She said the doctor brushed it off, reminding her that, at the time, the life expectancy of someone with Down syndrome was only about 25 years.

Monday, August 19, 2013

High school football squad embraces teammate with Down syndrome

by Stephen Hargis from the Times Free Press:
The rain clouds that have lingered over the area much of the summer finally had lifted, and the late afternoon sun, along with the promise of a new football season, was energizing Hixson High School's players.
As more than 70 teenage boys worked through various drills, the thud of pads crashing and the chirp of a coach's whistle were prevalent for the first few minutes of practice.
Just then, after the authoritative yell of head coach Jason Fitzgerald boomed instruction, another voice could be heard giving encouragement.
See video here.
Austin Clark, a 4-foot-2, 135-pound freshman lineman, and the heart and soul of this year's Wildcats, adjusted his helmet and greeted each teammate who completed the tackling drill with a fist bump, a 1,000-watt smile and an endless supply of spunk.
"Come on! Let's go!" Clark yelled.
Nodding toward the diminutive player fidgeting with an oversized jersey, Fitzgerald smiled and said, "If every kid came to practice with the same attitude that Austin has every day, we wouldn't lose a game. That kid is what's right about high school football.
"He's why I love coaching at this level."

Sunday, August 18, 2013

Offers pour in to help Braedyn Stovman, mother surprised by hundreds of messages

by Sian Tompson from the Courier-Islander:
It did not take long for Campbell Riverites, present and former, to respond to a lonely little boy who just wanted to belong.
On Friday the Courier-Islander told the story of Braedyn Stovman, a 12 year old with Down Syndrome and other challenges.
He just wanted to have friends. He just wanted to learn how to skateboard. He just wanted to be accepted for who he is.
Brandi Morrison-Stovman, Braedyn's mom, said she has had hundreds of replies to her facebook page offering encouragement and friendship.
"When I read this story this morning it made me sick to my stomach and I cried," said Lydia, Mike, Chris, and Zach in an email to the Courier-Islander. "We as a family would like to offer our friendship to both mother and son. Our 18-year-old son is willing to teach Braedyn to skateboard, he skateboards all the time and at one time wanted to go pro. He is willing to spend some time to teach him."

Saturday, August 17, 2013

Those with Down syndrome living longer, better lives

Ishan Munshi is a resource specialist at the Lenox Baker Children’s Hospital at Duke.
The 21-year-old also has Down syndrome.
In the Down syndrome program at the hospital, Munsi is someone that patients can look up to. That includes 16-year-old Matthew Schwab.
“I asked him how to get a girlfriend,” Schwab said of his most recent conversation with Munshi. “He had something quite interesting to (teach) about that.”

What was Munshi’s advice? “Be very gentle,” he told the teen. “Do not make a girl cry.”
Whether the topic is girlfriends, getting a job or going to college at the University of North Carolina Greensboro, like Munshi does, it all represents a dream for many people with Down syndrome, a genetic disorder that affects one out of nearly 700 people born in the United States.
Schwab calls it being a self-advocate.
“What it means to be a self-advocate is to be real independent,” he said.
Dr. Priya Kishnani, a Duke pediatrician and medical geneticist, says there are numerous advances for children born with Down syndrome, including the correction of heart defects and medicine to improve cognition.
They're living longer – often longer than their parents or caregivers.
“We've got to find ways to allow them to be independent in society and to make contributions to society,” Kishnani said.
Munshi's contribution is hope for others born with Down syndrome and for their families.
“They need freedom. They need to be happy, not feel sad and making the parents sad – that isn't good,” he said. “But it's a good thing to talk about how they feel from the heart.”
Munshi’s position with Duke is supported by funding from Anna's Angels, a Cary nonprofit that funds research and programs in Down syndrome.

Friday, August 16, 2013

Why having a child with a disability is not like being sent to Holland

Why having a child with a disability is not like being sent to Holland.
This parable bothers me. It bothers me a lot. While it is certainly uplifting, it makes me uncomfortable, because it denies a central and in my mind, undeniable fact about the experiences parents of children with life altering difficulties face: It is much harder and more difficult to parent a child with a disability than it is to parent a neurotypical child with no health challenges.
In my mind, a more accurate analogy would be this:
Imagine planning a trip to Paris for you and your partner. You get your guidebooks, your luggage, your wardrobe and your plane tickets. You research everything about Paris so you'll be ready when you arrive. You make make reservations. You talk with friends and family about their wonderful trips to Paris and how much fun they had. The two of you talk everyday about how much you want to go to Paris and how amazing it's going to be when you get there.
You get on the plane and take off. Suddenly, without explanation, the plane is diverted. Then at 5000 ft you and your partner are yanked out of your seats, strapped into parachutes you only vaguely understand, and tossed out the door.
Some how you manage to make it to the ground.

Thursday, August 15, 2013

NDSC Convention: Workshop Recordings Available Online

Denver Convention Logo English 
If you attended our convention in Denver, you know what an awesome learning experience it was. Now, you can listen to 55 of the conference workshops - which is probably about 50 more than you were able to attend while you were there!

If you were unable to attend this year's convention, here's your opportunity to learn from the best, on topics that cover the
lifetime of individuals with Down syndrome.
These recordings will be available for your unlimited viewing/listening until July 2014. 

Wednesday, August 14, 2013

Spanish Angela Bachiller first councilwoman with Down syndrome

Angela Bachiller has become the first councilwoman with Down syndrome, after taking possession of her office in Valladolid city council, Spain.
A real example of self-improvement and empowerment that has conquered the heart of the whole country during these tough days when corruption and recession have made the majority of citizens lose faith in their politicians.
Bachiller, 30, had been working in the area of Social Welfare and Family as an administrative assistant for three years.
Now, this young woman who defines herself in an interview in the Spanish newspaper Publico as “friendly, positive, tenacious and stubborn,” is willing to work to give visibility and opportunities to other people with special needs.

Tuesday, August 13, 2013

5 Inspiring Latinos with Down Syndrome

by Paloma Corredor from
As things are slowly changing, more and more people with Down syndrome are making a difference.
One of them is definitely Angela Bachiller, the first councilwoman with Down syndrome, who has just taken office at the city council in Valladolid, Spain. Bachiller, a lively 30 years-old who defines herself as friendly, positive, tenacious and stubborn, had been working in the area of social welfare and family as an administrative assistant for three years. She wants to work to give visibility and opportunities to other people with special needs.
Like Bachiller, other people with Down syndrome not only are achieving their goals, but they are showing the world that, unlike the common perception until very recently, they can do just as many things as any other person. Some of them are Latino, and these are their stories.

Monday, August 12, 2013

Could it be a 'cure'? Breakthrough prompts Down syndrome soul-searching

from JoNel Aleccia from NBC News Blog:
In the 14 years since her daughter, Rachel, was born with Down syndrome, Jawanda Mast has always been clear that she’d change the condition if she could.
“I couldn’t love her more, but I would give almost anything to take away that extra chromosome,” the Olathe, Kansas, mom wrote on her blog. “While I may know she’s perfect, the world doesn’t.”
But when Massachusetts scientists announced recently that they’ve found a way to silence the chromosome that causes trisomy 21, also known as Down syndrome, it rocked Mast – and the rest of the disability community.
“It’s so hard to imagine you could actually do that,” Mast told NBC News. “Yes, I would take away the challenges, I would take away the health risks. But now I also stop and say, ‘Oh my goodness, how would that impact the rest of her?’”

Sunday, August 11, 2013

man with Down syndrome retires from company after 23 years

from the Wicked
After 23 years of service, Randy Dottin is retiring from Houghton Chemical Corporation. Dottin is visually, verbally, mentally and physically challenged. As occurs with most people with Down syndrome, Dottin now suffers from Alzheimer’s, forcing his retirement.
Dottin was employed through the Walnut Street Center, a service for special needs people in Cambridge/Somerville. Over these past 23 years, he became an integral part of the corporation, greeting arriving visitors, emptying the trash, stuffing, stamping and sending mailings. Most importantly he provided a sense of joy and play to what would only have been a business atmosphere. Employees will never forget him leading the chicken dance, Macarena and electric slide in the middle of the office, his consistent marriage proposals to every woman in the office without prejudice of their religion, country of origin or marital status and the joy of playing Simon Says or hide and go seek.

Saturday, August 10, 2013

Gretzky's least known achievement: Changing Joey Moss forever

by Tom Braid from the Edmonton Sun:
Sometimes the simplest question can receive the most powerful answer.
"Thank you very much ... (for) my life."
That's how 49-year-old Joey Moss -- who has Down Syndrome and who has been an Edmonton Oilers' dressing room attendant for 29 years -- responded when asked what he would say to Wayne Gretzky if he had the chance now.
Stephen Moss, Joey's 45-year-old brother and guardian, says Gretzky positively changed not only Joey's life but that of the Moss family.
It all began when Vickie Moss, Joey's sister, met Gretzky one night in 1981 when she was singing at a local bar.
"He comes into our lives, this is where Wayne's pixie dust sprinkles," says Stephen.
"Everything blossoms, we have a better life, way better, absolutely magical."
First thing, says Stephen, "He gives my mom a job, in charge of his fan mail."
In 1981, Gretzky had up to 20,000 pieces of mail come in garbage bags ever week.
Sophie Moss had been a widower since 1977; she was "scraping by" with three of her 13 kids still at home.
With the fan mail job, she made extra money to support the family.
Then, in 1984, Joey followed Stephen into the Oilers' locker room as a staff member.
Wayne had previously asked Joey if he was happy at his bottle depot job and Joey answered with his exuberant "YES!"

Friday, August 9, 2013

Detriot community beats alleged rapist of 15 year old girl with Down syndrome after slow police response

Community members in one Detroit neighborhood took matters into their own hands and beat an accused rapist of a 15-year-old girl with Down Syndrome after they say Detroit Police failed to respond.
Friday marks the 23rd day without an arrest after the 15-year-old victim said a man grabbed her while she was walking to work, took her to his apartment and raped her in early July.

The suspect lives in the same neighborhood as the victim. Members of the Hubbard Farms community say the man has mental health issues. They posted his face on flyers around the neighborhood to warn others.
Family friend of the victim, Megan Herres says the teen waited for seven hours at the hospital for Detroit Police to administer a rape kit. She reportedly waited five days before police interviewed her about the sexual assault and 21 days until Detroit Police sent the rape kit to the Michigan State Police Crime Lab.
“That’s just not acceptable,” said Herres.  “DPD, we want to see an effort toward sexual assaults of minors,” she continued “It’s not good to live in a community where people don’t feel safe."

Podcast: Rachel Coleman of Signing Time

DSR Episode #22: Signing Time with Rachel Coleman!

Rachel takes us back in time, telling us the story of her first child Leah and handling her deafness from diagnosis to the development of Signing Time.  Like our children with Down Syndrome, Rachel found that Leah was considered ‘different’ but that when she taught the other children a few signs, she no longer seemed so different.  The parallel here is that advocacy and mainstreaming make our children seem more the same than different and that is how it should be.

Rachel and her family

Rachel’s struggles weren’t over.  Her second child Lucy was born with spina bifida and cerebral palsy.  Rachel found that signing was again a big help.  She also learned that all children (including those with special needs) can learn signs much earlier than speech.  She teamed up with her sister to create Signing Time.
We also got a lot of great stories about the actual creation – green screens, tape on fingers, the mythical orange vest, etc.  It was really great hearing the story of Rachel’s family.  Signing Time is a great show and who knows how many kids it gave the power to communicate…

You might ask how this relates to Down Syndrome.  As we all know, our children generally speak later than typically developing children and in some cases, this delay can be extreme.  Some of our children remain completely non verbal.  Rachel found that in many cases, these children can sign long before they have the oral motor skills, etc. necessary for speech.  As a testament, this was fairly successful with my son Luke and all of us (Rick and Jason too) still see signs coming from our kiddos.

Rachel is working on a new television show called Rachel and the Treeschoolers.  She is taking educational television to the next level by including a full preschool curriculum.  Apparently TV execs thought her shows would be TOO educational.  So, she decided to crowd source.  That means that listeners help fund the show.  Let’s stick it to the TV execs!  Check out at her Kickstarter campaign here.  You can also see all of the other stuff at

Thanks for spending an hour with us…

Download Down Syndrome Radio, Episode #22.
Better yet…subscribe, rate us and leave a comment on iTunes!

Thursday, August 8, 2013

Podcast: NDSC Convention Round-up with guest Mac Macsovits

DSR Episode #21: Convention Roundup with Mac Macsovits of RMDSA

The NDSC Convention last month was fantastic!  And who would know more about it than Mac Macsovits of the Rocky Mountain DSA?  It turns out Rick and his family were also there.  The convention was very well attended with excellent sessions and events.  Great times were had by all!  Tune in and hear all the details!

We also get to hear about Rick’s visit to Albuquerque to visit the world’s friendliest restaurant, Tim’s Place!

Oh and anyone catch the irony of the Episode Number being 21?  Maybe I should point it out three times…  (get it?  Trisomy 21?).
As always, we would love to hear your comments and questions.  Also, please leave us a review on iTunes if you get a chance.

Download Down Syndrome Radio, Episode #21.
Better yet…subscribe, rate us and leave a comment on iTunes!

Wednesday, August 7, 2013

Florida Law Cancels Bout Between Two MMA Fighters with Disabilities

by WINK CBS News:

A controversial Mixed Martial Arts fight between two fighters living with disabilities is canceled just minutes before the match.

One of the fighters has down syndrome and the other cerebral palsy. The state stepped in and shut it down claiming it was unsanctioned. On of the fighter's fathers say it's discrimination.

That fight was set to take place at the Seminole Casino in Immokalee. It's something both of these men told me on Friday was a dream come true. Now they are fighting to find a way back into the ring.

It was a fight that was supposed to be a first of its kind. One both Garrett Holeve, 23, and David Steffin, 28, had been dreaming of, but five minutes before the first punch, the state presented the promoter with a cease and desist letter.

"He cried. It genuinely upset him," says Mitch Holeve, Garrett's father. "He's worked eight weeks in a training camp, training four and a half hours a day for eight weeks getting mentally and physically prepared to do this."

Garrett has Downs syndrome and his opponent David has cerebral palsy. The fight was supposed to happen because the match was being held on tribal land, but a letter from the DBPR says the scheduled bout between the two amateur fighters is unsanctioned and against Florida Law.

"He's upset because he knows he's being told he can't fight because he has Down syndrome and that hurts his feelings and that angers him" says Holeve.
A representative with the World Fighting Organization tells WINK News, "the safety of the fighters is our number one priority and he doesn't think the decision was made on the basis of discrimination, but solely on fighter safety."

Holeve says his son got medical clearance and show have been able to fight. "I think their decision was pretty arbitrary, discriminatory," says Holeve.

"We have two guys with disabilities and we don't want them to fight here. This is his life and they're stopping him. As his dad I am just going to make sure he can do it safely and his rights are infringed upon and I'm not stopping anywhere until that happens."                    

Holeve is talking to the Boxing Commission and he says he has also reached out to the National Down Syndrome Society.

Tuesday, August 6, 2013

Born with Down syndrome, Newark man wins respect powerlifting

by Kelly Bothum from The News Journal:
Sitting at the kitchen table in his family’s Newark home, Jon Stoklosa comes across as a laid-back, almost shy guy. He answers questions with a word, preferring instead to look out the backyard window and let his parents, Hank and Liz, do the talking.
But the medal he clasps in his right hand offers a glimmer of the personality that hides beneath his sturdy 5-foot-5 frame.

It’s from a recent powerlifting competition in upstate New York, one where he bench-pressed a personal best of 402.5 pounds and came in third in his age division. He also picked up the “Most Inspirational” award, a unanimous choice by other competitors, many of whom gathered to watch the 31-year-old make his lifts.
Friends and family say Jon, who was born with Down syndrome, is an example of what is possible when people aren’t tethered by labels.
In addition to being able to bench-press more than 400 pounds, Jon can squat 440 pounds and dead-lift an identical amount. He has excelled at the sport, winning a gold medal in the Special Olympics World Games in 1999.

Monday, August 5, 2013

Jenny Hatch, woman with Down syndrome, can live with friends

from USA Today:
 A 29-year-old Virginia woman with Down syndrome has prevailed over her parents in a guardianship case that allows her to live with her friends instead of in a group home.Margaret Jean "Jenny" Hatch has been fighting for nearly a year for the right to move in with friends, couple Jim Talbert and Kelly Morris, who employed her at their thrift shop.
Hatch's mother, Julia Ross, and stepfather, Richard Ross, filed for guardianship against her wishes. The Rosses argue Hatch needs the support and safety of a group home.
In their request for guardianship, Hatch's mother and stepfather asked for the right to decide where she lives, what medical treatment she receives and who she can see. They believed the group home setting offered the safest environment, The Washington Post reports.
On Friday, Newport News, Va., Circuit Judge David Pugh ruled that Hatch is incapable of being independent and requires a legal guardian for her care, but that he must consider her wishes regarding whom her guardian should be.
The judge gave Talbert and Morris custody of Hatch for the next year, a victory for disability advocates.
After the hearing, an elated Hatch called Talbert and Morris her "family" and said it was great to be going "home" with them, the Daily Press in Hampton Roads, Va., reports.
During court proceedings, Hatch sat on the opposite side of the room from her parents, next to Talbert and Morris. Behind Hatch sat more than a dozen supporters from the Hampton Roads area, several with the words "Justice for Jenny" written on T-shirts and bracelets, The Washington Post reports.
Facebook group Justice for Jenny has more than 3,500 likes.
Susan Mizner, disability counsel for the American Civil Liberties Union, said, "This decision is a big step in the right direction. ... Guardianship raises grave concerns because it strips people of their fundamental right to live with independence, freedom and dignity. Disability is no excuse to deprive someone of her basic civil liberties, and we are thrilled that Jenny will get some control of her life back."
Contributing: The Associated Press
Follow reporter Natalie DiBlasio on Twitter at @ndiblasio.

Sunday, August 4, 2013

Local YMCA Named Employer of the Year by Down Syndrome Congress

By Emily Roehler from NTV ABC:
The National Down Syndrome Congress has honored the YMCA of the Prairie in Holdrege with the 2013 Employer of the Year award.
The Y was nominated by the family of employee Creighton Wall, who has Down Syndrome and has worked at the Y for seven years.
CEO Jeff Morgan and Creighton Wall received the award at a banquet on Saturday, July 20, in Denver.
"We are honored to be among past award winners such as Walgreens and McDonald's Corp. in the support of employing those with Down Syndrome or other disabilities," YMCA CEO Jeff Morgan said.
Other past winners of the awards include large employers such as Sears Roebuck, Marriott Corp., Target Stores and the University of Alabama.
James A. Faber, president of the National Down Syndrome Congress, said, the Y's "support of Creighton Wall, and the consistent, well-applied instruction, guidance and evaluations help him to be the best he can be."
Wall's parents noted the loving and accepting environment their son was a part of at the Y and that he was treated as a valued employee.
Creighton started at the Y as a volunteer and was hired as an employee in the house-keeping department when the new Y opened in 2006. He also has led a walking club at the Y.
Creighton said he likes working at the Y to meet new people and stay motivated to maintain his health. It's also something he feels called to do.
"I love the Y, and God called me to work here," Creighton said.

Saturday, August 3, 2013

Ashley DeRamus makes her debut in Grammy Award winner Jason Crabb's new video "Love Is Stronger"

By Rona Kilpatrick-Shedd from
Ashley DeRamus of The Ashley DeRamus Foundation, an organization founded for and dedicated to the education, advancement and quality lifestyle of children and adults with Down syndrome, made her music video debut with Grammy Award-winning Christian and gospel singer Jason Crabb in a video for his new single, "Love Is Stronger". Filming took place on Thursday in Birmingham's Caldwell Park off Highland Avenue.

DeRamus, the 30-year-old founder and namesake of the foundation who also has Down syndrome, is featured in the music video along with numerous other families impacted by Down syndrome from throughout the Southeast. The video will be used by The Ashley DeRamus Foundation to promote general awareness of Down syndrome.

The completed video will tell the story of a father who says goodbye to his daughter who has Down syndrome as he heads off to war. The father is severely wounded in an improvised explosive device (IED) attack but fights to recover from his injuries so he can return home to his daughter. DeRamus, playing the role of the daughter, will begin the video by reciting the Pledge of Allegiance with members of a color guard surrounded by military veterans and their families prior to a community fun run/walk, which is relevant to the song's theme.

Revolution Pictures of Nashville, TN, is producing the video under the direction of Roman White, who has produced videos for country music stars Carrie Underwood, Kelly Clarkson and Blake Shelton. Rather than using actors, the production company has invited veterans to participate as extras in the video.

Friday, August 2, 2013

Couple wins custody of Jenny Hatch

Couple wins custody of Jenny Hatch
The custody battle of a 29-year-old woman with Down Syndrome came to end Friday afternoon.
Jenny Hatch has been in and out of courtrooms for months, fighting to live with her friends, couple Kelly Morris and Jim Talbert, instead of at a group home. Friday a judge granted that wish and gave the couple custody of Jenny for the next year.

The verdict was revealed in a Newport News courtroom a little before 4 p.m. Full guardianship of Jenny was taken away from her mother, Julia Ross, who wanted Jenny to live in a group home. After a year under the guardianship of Morris and Talbert, Jenny will be able to make her own decisions.
Morris and Talbert have a history of caring for Jenny, and say they will gladly take her in.
WAVY News' Lauren Compton was at the hearing Friday and will give a full report of Jenny's last day in court for this case starting at 5 p.m.

American Horror Story Season 3 [FIRST LOOK]: Actress Jamie Brewer Returns

from KpopStarz:
"American Horror Story" season 3 is officially filming in New Orleans, and another actress who is returning to "Coven" after being featured in season 1 is Jamie Brewer.
In a group of "American Horror Story" season 3 set photos taken by VJ Brendan, Jamie Brewer can be spotted filming a scene with fellow cast members Jessica Lange, Lily Rabe, Gabourey Sidibe, and Emma Roberts.
To view more "American Horror Story" set photos by Brendan, click here!
As previously reported, "American Horror Story" season 3 has been filming in the French Quarter, and it is the first official sighting of so many cast members at once!
Jamie Brewer can be recognized as the actress who graced "American Horror Story" season 1 as Adelaide "Addie" Langdon, the daughter of Jessica Lange's character.
However, as of now, Brewer's character for "American Horror Story: Coven" is still under wraps.
TV Show Auditions, a website with updated casting and auditions information, provided an article regarding "American Horror Story," which will reportedly film in both Los Angeles and New Orleans.
"'American Horror Story: Coven' will center on a family who moves across country after suffering a tragedy. The theme will be witches and witch hunts."
"Jessica Lange will be playing a 'glamor cat' and will be going at it against Academy Award winner Kathy Bates. Bates will portray a woman who, at the start, is Lange's character's best friend, but will become her worst enemy."
Jessica Lange, who has been with "American Horror Story" since its inception, will play a character named Gwen, while Francis Conroy will play Ruth.
According to Carter, the show is currently seeking actresses to play younger versions of both characters (in their 20's).
"American Horror Story" season 3 will grace FX this October. Stay tuned!