Friday, January 31, 2014

Special meeting between Down syndrome achievers Stephen Green and Micky Neal

by Alexa Copeland from The Northern Echo:
THE country’s first parish councillor with Down’s syndrome made a four-hour round trip to meet a North East man thought to be one of the oldest with the condition.
Stephen Green, 48, was elected as a councillor on Nuthall Parish Council in Nottingham in 2012, making him the first and only serving British councillor with Down’s syndrome.
When Stephen’s father Grenville read a Northern Echo article online about the 70th birthday of Down’s syndrome man Micky Neal from Darlington, he set about arranging a meeting between the pair.
Mr Green said: “When I read about Micky, I just thought ‘I have to meet this family’.
“It is just amazing that Micky is the same age as myself, and at that time things were so much more difficult for people with Down’s syndrome.
“They were expected to be put into institutions and it is amazing that this lovely family worked together to give Micky such a happy and loving life.”
Mr Green said that although attitudes have changed, his son has experienced some negativity from councillors who do not think he is up to the job.
He said that Stephen makes his feelings clear by giving a ‘thumbs down’ to those councillors who say things at meetings that he does not agree with.
Mr Green added: “In his role as parish councillor Stephen is breaking down barriers.
“When he goes into schools to award prizes you can see the difference in the children after they have met him.

Thursday, January 30, 2014

Association offers etiquette classes for those with Down syndrome

by Andrea Salazar from
For teens with Down syndrome, a night out without their parents is almost unheard of.
That's why the The Down Syndrome Association of the Brazos Valley offers etiquette classes that take the children out to nice restaurants and theaters without their folks.
"Without the expectation of a parent, it gives [the children] the opportunity to make these decisions themselves that this is how you act in public regardless of whether a parent is there or not," said Rose Schmitz, president of the local nonprofit group, working to support people with Down syndrome and their families.
The organization hosts classes for children and adults with Down syndrome throughout the year, including computer, math, reading, cooking, fitness and handwriting, to supplement lessons learned in school and help them gain life skills.

Wednesday, January 29, 2014

Zoe Perryman, opens up on TV about her quest for love

By Anna Young from Kent Online:
A young woman proved all you need is love when she found happiness on a TV dating show for people with disabilities.
Self-confessed hopeless romantic Zoe Perryman, from Maidstone, has Down’s syndrome. She has two engagements under her belt but her failed relationships only make her more determined to find ‘the one’.
More than a million viewers tuned in to Channel 4 last Thursday to watch the 24-year-old take a chance on The Undateables.
The series follows a group of hopefuls with learning or physical difficulties on their quest for romance.
Zoe was set-up with 32-year-old Nsimba Lupepe, from Ashford.
The pair’s first date was at Chessington World of Adventures in Surrey and their second meeting was at Embankments, formerly the Barge, which floats on the River Medway in Maidstone. And five months after the episodes were filmed in September, the couple are still together. Zoe said: “It’s going really well. I go to see him and he comes to see me. I’ve met his family and he’s met my parents and some of my friends. He’s really nice. We’re very happy and just seeing how things go.”

Tuesday, January 28, 2014

A very special performer shines at Dixie's Got Talent

Tonight, 19-year-old Madi Sonju fulfills a dream as she joins the contestants of Dixie’s Got Talent, competing for top honors in this annual talent competition. Madi, who will be performing a dance to the song “Let it Go” from “Frozen,” has unique talents that have landed her in the DGT finals along with 23 other acts – but Madi stands apart from her competitors in that she was born with Down syndrome.
But nothing stops this irrepressible young woman from achieving her goals – whether it’s competing in the Special Olympics, becoming a member of her high school cheerleading squad, being crowned homecoming queen or competing in Southern Utah’s biggest talent competition.
“This was Madi’s dream and she made it happen,” said her mom, Leslye Sonju.
Madi attended last year’s Dixie’s Got Talent competition with her family, and she was so entranced by the show that she made up her mind she would be onstage this year – not just in the audience. So she watched all year for posters to go up announcing the 2014 auditions. When they finally did, Madi took a photo of the poster with her cell phone and immediately sent it to her mom.
“She asked me every day: ‘Did you call? Did you call? Did you call?’” Leslye Sonju said.
Madi went through the audition process and made it all the way. Tonight, she’ll show the local audience just what she can do.
“I’m very, very excited,” Madi said.

Monday, January 27, 2014

Sexuality and Down Syndrome

Featured Image
Human sexuality encompasses an individual's self-esteem, interpersonal relationships and social experiences relating to dating, marriage and the physical aspects of sex.

Sexuality & Down Syndrome
This section seeks to answer common questions about the important issue of sexuality and Down syndrome.
Social and Sexual Education
An interview with Leslie Walker-Hirsch, M.Ed., FAAMR, about the importance of a social/sexual education for individuals with Down syndrome.

Sunday, January 26, 2014

Rival teams come together for player with Down syndrome

from CBC News:
Cross-town school rivals in Charlottetown came together last week to give Cameron Gordon, who has Down syndrome, his first shot at basketball glory.
"It feels awesome," said Gordon.

"Like I'm super famous."

Gordon is a student at Birchwood Intermediate School, and decided this year he wanted to try out for basketball. His mother, Catherine MacInnis, had her doubts about whether he would make the team.

"It certainly has been challenging," said MacInnis.

"There are things he's wanted to do that he hasn't been able to do."

Gordon's disability makes it difficult for him to compete on skill, but when it comes to spirit, he brings something to the gym everyone on the team wanted.

Saturday, January 25, 2014

Defendant takes plea deal in shooting of teen with Down syndrome

by Rosalio Ahumada from The Modesto Bee:
Attorneys on Wednesday unexpectedly agreed to a plea deal that will result in a 24-year prison sentence for a man, now 21, who in 2009 fired 10 shots into a minivan near Modesto. The gunfire killed a 16-year-old boy with Down syndrome.A trial started Tuesday morning for Richard Maurice Jolly, who was accused of murder in the shooting of Eliazar Hernandez.

After the attorneys’ opening statements, the jurors didn’t hear any testimony in the trial. Instead, the attorneys told the judge Wednesday morning that they had reached an agreement that would end the trial and close the case.

Jolly pleaded guilty to voluntary manslaughter with an enhancement for using a gun and three counts of assault with force likely to cause great bodily injury, according to the Stanislaus County District Attorney’s Office. The boy’s family also was in the minivan when the gunfire struck the vehicle.

As part of the agreement, Jolly will be transferred to prison immediately after he is sentenced Feb. 19. In that hearing, the boy’s family will have an opportunity to speak in court about the impact of his death.

Friday, January 24, 2014

Restaurateur Tim Harris to appear on 'The View'

ALBUQUERQUE, N.M. —An Albuquerque restaurant owner is back in the national spotlight and is set to take his trademark hugs all the way to ABC's "The View."
There are a number of reasons to check out Tim's Place restaurant, but many come to see Tim Harris. Harris, who has Down syndrome, opened up shop in northeast Albuquerque years ago.
His inspiring story draws patrons from all 50 states and more than 30 countries. Many see his story on social media and come to check out his cheery personality and free hugs.
"I want people to feel all the love," Harris said.
"The View" flew Harris and his family to New York City earlier this week to record a segment. A love for the movie "Sister Act" had Harris pumped up about the trip.
"I love Whoopi Goldberg. I can't wait to meet her," he said.
It's been a busy week for the restaurant owner. The segment was filmed Tuesday and he had to hurry back to start his annual Hug-A-Thon. Harris hopes to raise $10,000 through the Hug-A-Thon for local firefighters. It could take as many as 2,000 hugs to reach that goal.
Viewers can see Harris' interview on "The View" starting at 10 a.m. Friday on KOAT-TV.

Read more:

Thursday, January 23, 2014

Man Charged for Sexually Abusing Woman With Down Syndrome

from KOLR 10 News:
DADE COUNTY, Mo. – An Everton man is in jail after he sexually abused a 23-year-old woman with Down syndrome, according to the Missouri State Highway Patrol.

According to a probable cause statement from the Dade County Circuit Court, James W. Morgan, 60, of Everton, was arrested on Jan. 17 and charged with first-degree sexual abuse.

On Jan. 17, the victim was being treated at a local hospital when authorities were alerted to the incident.

According to the statement, Morgan was found naked with the victim, who was also naked and attempting to hide under a bathrobe.

During a post-Miranda interview, Morgan admitted to engaging in sexual acts with the victim on two occasions, according tot the Missouri State Highway Patrol.

Morgan is in the Dade County Jail under a $100,000 bond. A pre-trial conference is scheduled for Feb. 11, 2014 at 10 a.m.

Wednesday, January 22, 2014

FEB 27: Fashion Show Open Auditions for Models with Down Syndrome for Global Down Syndrome Foundation’s Be Beautiful Be Yourself Gala

GDSF Auditions
By Liz Susla from Silver Spring Patch:
Fashionistas with Down syndrome are encouraged to audition for a spot in the fashion show of the Global Down Syndrome Foundation’s (Global) Be Beautiful Be Yourself Gala, a high-style fundraiser with celebrities and members of Congress taking place in D.C. on May 7 that is designed to raise awareness about this chromosomal disorder that affects one in 691 babies. 
Auditions for the gala take place on Thursday, February 27, 2014 from 5:30pm-7:30pm at Mary Ellen Henderson Middle School located at 7130 Leesburg Pike in Falls Church. Auditions are open to individuals with Down syndrome and other disabilities who are seven years old and older.
No experience is necessary.  Models are encouraged to wear nice clothes for this fun event.  A practice session will precede the auditions.  A panel of judges will pick the models for the May 7th gala.  Selected models must be able to make several required time commitments, including a clothes fitting and a rehearsal on the day of the gala. To register for the auditions or learn more, visit  Auditioning does not guarantee a spot in the gala.
Down syndrome is the most frequent chromosomal disorder affecting an estimated 400,000 Americans, but is the least funded genetic condition by the National Institutes of Health (NIH), securing an infinitesimal part of NIH’s annual budget. Global is focused on raising funds and educating the public and leaders about the discrepancy in research funding for the condition, as well as the abilities and achievements of those who happen to have Down syndrome.

Tuesday, January 21, 2014

Albert Lea Wrestler's Selfless Act Gives Opponent First Win

A sophomore wrestler from Albert Lea intentionally lost his match in order to make his opponent's day.
"I found out he had Down syndrome, and then once I was told that, I knew that I was going to give him the match because I was told he hasn't won a match or anything yet," Ryleigh Bure said.
He had his mother Danielle Bure film the match against Kyle, who has Down syndrome.
Ryleigh said he didn't tell anyone his plan.
"Everyone deserves to win. I know what it feels like and he hasn't had a win yet, so I thought he deserved to feel what it felt like to win."
Though he didn't win the match, Ryleigh said he felt like a winner as he walked off the mat.
Video courtesy of KSTP sister station KAAL.

Monday, January 20, 2014

Father of rape victim with Down syndrome speaks out

by Alice Clinton from The Enquirer UK:

The father of a young woman with Down’s Syndrome who was raped last September has spoken about the “devastating” attack on his daughter and his anger over the short sentence given to her rapist. 

This comes after 18-year-old Liam Felton (pictured), was jailed for eight years for the offence on Monday (13 January).

On the evening of Thursday, 12 September 2013 the victim, aged 22, had been at home in the Harold Wood area with her mother and stepfather. 

Earlier that night they had attended an evening held in memory of the victim’s best friend, who had recently died due to heart problems. 

The victim’s father has said she was upset after the evening and had a headache. When her parents were asleep, just before midnight the victim decided to go for a walk and she left the house.  

The victim walked to Station Road and sat on a bench. Felton, who lived nearby and did not previously know the girl, walked past and doubled back to sit on the bench once he noticed her. Felton attempted to engage her in conversation and after around 15 minutes the pair got up and walked for about five minutes. 

Felton then grabbed the victim, forcing her into an alleyway behind some shops before raping her twice and fleeing the scene. 

Sunday, January 19, 2014

Dunlope grows from love of sport

by Frank DiRenna from This Week
Anna Dunlope has been a part of the Westerville South High School swimming and diving program for four seasons.
Although she may not have had the same results as some of her teammates, her enthusiasm is endless.
Dunlope, 19, has Down syndrome, but she has not allowed it to hinder her love for the sport.
"We're very proud of her," said her mother, Debbie. "She loves swimming. It's been a tremendous positive influence in her life. The friendships that she has developed and the support system that she has with the other swimmers -- and just the camaraderie going to swim meets and seeing kids from other schools that she knows -- being part of a team is huge."
Anna's favorite event is the 100-yard breaststroke, but she also competes in other events, including the 50 freestyle. Her father, Doug, believes she has a personal-best of about 54 seconds in the 50 free.
She credits her teammates and coaches for helping her progress and enjoy competing in the sport.
"They keep me on track of what we're doing," she said. "Coach (Jeff Riegler) teaches me to go faster."
Anna is the only senior on the girls team, and Riegler expects her to receive special recognition during the Wildcats' season-ending awards ceremony.
'That makes me feel special," she said of being the only senior. "This is my last year. It's kind of sad."
"She can't do everything, but she doesn't really stop," Riegler said. "Everybody treats her with respect and you can't ask for a better teammate."

Saturday, January 18, 2014

DSR Episode #25: DS Connect with Lisa Kaeser

The new DS Registry will provide huge opportunities to improve the lives of our children! We had the opportunity to speak with Lisa Kaeser about DS Connect which launched in September.  Just listen to the list of potential benefits that will come out of this important new registry:
  • Help connect people with DS to scientists who study DS.
  • Speed up research in DS by collecting information that scientists can use.
  • Help scientists learn why people with DS have different symptoms.
  • Help health care professionals improve how they treat people with DS.
  • Advance understanding about how and why certain treatments work and don’t work.
  • Help scientists develop and test new treatments for people with DS
Get excited people!  These are serious benefits for our loved ones!  Signing up only takes a few minutes – both Rick and I did it.  Also, you get access to awesome demographic data on children with DS.

Lisa Kaeser is the Director of Legislation and Public Policy for the Eunice Kennedy Shriver National Institute of Child Health and Human Development.  Lisa was a wonderful guest and told us ALL about it.  We went over the history of the effort and the development of the registry as well as the types of data it will contain.  The uses relate directly to the goals listed above.
One really big issue was privacy.  This is important to many folks so we went through this thoroughly.  The contact data is kept completely separate from the actual data.  Researchers can see the registry contents by category, but can never find out information about a specific individual.  Registrants can ‘opt in’ to be contacted under specific circumstances such as a medical discovery or to potentially be part of a research trial.  Rick and I both filled it out and I for one thought it felt really safe.
Go and register – it is quick and easy, we promise:

Oh and while you are in a good mood, go to iTunes and look us up.  Click subscribe and give us a good review.
Download Down Syndrome Radio, Episode #25.
Better yet…subscribe, rate us and leave a comment on iTunes!

Friday, January 17, 2014

Vatican Radio's newest intern

from Vatican Radio:
Vatican Radio’s English section is proud to introduce our newest intern, Michael Gannon. The Director of Vatican Radio’s English Section, Sean-Patrick Lovett, first met Michael at the “Think Different, Think Europe” event hosted by Vatican Radio last May. It is a project associated with the Europe for Citizenship programme for the EU, and brought together citizens from different EU countries who have Down Syndrome. It was there that Michael suggested an internship at the Radio. Michael is the first person with Down Syndrome to do an internship at any Vatican office.

We have asked him to tell us more about himself. Listen: RealAudioMP3

My aims for this week

Hey folks this is Michael Gannon here. Just to introduce myself to one and all: I am from Ireland, I have lived in Kildare all my life. I have one brother and one sister and myself and my parents. We are out-going, we do different things together like celebrating Christmas, New Year, we support Kilkenny in the hurling and follow Kildare in the football and I support Manchester United
The one thing that you need to know is that I am a very hard worker myself. And keep very busy in what I do.

Thursday, January 16, 2014

Tokyo court stops deportation of Filipino man with child struggling with Down Syndrome

from Japan Daily Press by Maan Pamintuan:
The Tokyo District Court dismissed a deportation case filed against a Philippine national illegally residing in Japan. The 47-year old Filipino, who has a child with Down syndrome, was allowed to stay in the country to help the child receive the medical treatment needed.
Entering Japan illegally in 1997, the man was found by immigration authorities in 2009. The Tokyo Regional Immigration Bureau filed a deportation case in May 2012, which the man has sought to be nullified by the Tokyo District Court. His wife, who came into the country eight years after him has already acquired a permanent resident status. They have two children, with the youngest has Down syndrome and is going to a special school for the disabled. The child also needs thyroid medication treatment every three months.
Presiding judge Yutaka Taniguchi allowed the man to stay mainly due to the special needs of his child. He knew of the limited opportunities for “necessary treatment in the Philippines”, with minimal schools and teachers that offer specialized education, the kind that the man’s child needs. “There is a need to care properly for the child. But if the father is deported, the family he leaves behind will be in an extremely difficult position (financially),” he said. Though immigration officials noted that the child is already of age to adapt to life in the Philippines, the judge denied their argument and ruled in favor of the Filipino man.

Wednesday, January 15, 2014

Down Syndrome is Discussed in New "Leading Edge" Segment with Host Jimmy Johnson

from PRWeb:
Each year, approximately 6,000 children are born with one of the most challenging and unique diagnoses; Down syndrome. On average 400,000 Americans live with Down syndrome is the United States. There are three different types of Down syndrome, Trisomy 21, Mosaicism, and Translocation. Although they each have a separate chemistry, each form of Down syndrome possess abnormal characteristics of chromosome 21.
There is not a specific criteria for Down syndrome. People of all ethnic backgrounds and economic classes may give birth to a child with Down syndrome. NDSS also states that the older women become the more likely they are to give birth to a child with Down syndrome.
Leading Edge, with host Jimmy Johnson, will be creating a segment featuring the organizations that are providing crucial services in both well-being and social engagement. This segment is going to be crucial in bringing awareness to Down syndrome. Leading Edge will help educate many people to find support and encourage those with Down syndrome. You do not want to miss Jimmy Johnson and his intake on this serious diagnosis. This segment will serve as educational inspiration for those hoping to make a difference.
The Leading Edge series is distributed to Public Television stations throughout the United States and is not distributed through PBS. Please visit the Leading Edge website at or email the producers at for more information.

Tuesday, January 14, 2014

Father's Beautiful Journey With Son Who Has Down Syndrome Will Make Your Heart Soar

by Ron Dicker from The Huffington Post:
When doctors told Pablo Poncini his son may have Down syndrome, he said he fainted.
"Everything seemed to have gone wrong," he recalls in the short film (above). "It was as if the road we had started as a family had come to an end."
But the father has come a long way since then, and "The 1,000 Miles Of Luca" strives to show bits of Poncini's emotional awakening.
"Little by little, the Down syndrome disappeared and Luca appeared," the father recounts tenderly in the clip.
Poncini, an Argentine ad man, takes viewers on an 8-minute journey of bonding with his boy by using a car rally as a backdrop. Poncini gets to the heart of the matter frankly and eloquently.
"We realized that it wasn't really a problem," he says. "It wasn't a serious problem, nor was it a problem at all. We just had to get used to something different."
According to the Ads of the World description, Poncini's Buenos Aires agency was assigned to create a campaign to promote "the inclusion of people with disabilities."
Luckily for viewers, Poncini took it personally and had the camera turned on him and Luca.

Monday, January 13, 2014

Tweets from Jamie Brewer and Lauren Potter at the Golden Globes!

Tweets from Jamie Brewer (American Horror Story) and Lauren Potter (Glee) from the Golden Globes!

Jamie Brewer (@MsJamieBrewer) tweeted at 10:20 PM on Sun, Jan 12, 2014:
This was earlier on my way to the #GoldenGlobes!! Can't believe it!!!

Lauren Potter (@TheLaurenPotter) tweeted at 10:48 AM on Mon, Jan 13, 2014:
I had a blast last night at the Golden Globes! I was so excited to meet Ty Burrell! #goldenglobes #glee #modernfamily

Sunday, January 12, 2014

Tricks a real treat in St. Charles

Magician Paul Lee introduces his niece Teagan Sunday onstage at the Arcada Theater in St. Charles. He was hosting the third annual Believe in Magic show, sponsored by the National Association for Down Syndrome. Teagan has Down syndrome.
by Matt Arado from the Daily Herald:
There were plenty of illusions and trickery onstage Sunday at the Arcada Theatre, but the emotion was 100 percent genuine.
The third annual Believe in Magic event, a fundraiser for the National Association for Down syndrome, brought professional magicians from around the Midwest to the St. Charles theater on Sunday. The entertainment was led by Carol Stream-based magician Paul Lee, a 35-year professional who performs more than 300 show a year. Lee opened up the show with a few of his own tricks, including one in which he made a cute little girl seem to appear onstage out of thin air.
The girl was Lee's niece Teagan, who was born with Down syndrome in 2007. Lee struggled to keep his emotions in check when he introduced her to the crowd.
"She is the reason I'm doing this today," he said.
During a quick interview before the start of the show, Lee said he was delighted to see hundreds of people streaming into the Arcada on Sunday.
"It's amazing," he said. "I'm so grateful for everyone who helped put this together."

Saturday, January 11, 2014

In Ireland, half of children with Down syndrome 'at risk of losing vital aid'

Up to half of the country’s children with Down’s syndrome are at risk of losing their discretionary medical cards, a leading advocacy group has revealed.
Down Syndrome Ireland says that hundreds of children with the disability have already lost the medical benefit.
It also believes that children with Down’s syndrome will not receive discretionary medical cards – based on health needs rather than income - at birth.
Around 2,000 children under the age of 16 are estimated to have the condition in Ireland.
While the HSE hasn’t furnished figures on the number of children with Down’s syndrome who have lost their card, it says those who are not entitled to the cards are having them withdrawn.
Pat Clarke, CEO of Down Syndrome Ireland said “we would feel that 1,000 children are at risk”.
“This adds an additional burden to parents for both doctors fees and prescriptions.”
“Where there are people with Down Syndrome, there are a lot of attendant costs that aren’t taken into account like babysitting services or the fact that one parent may have to give up their job.”
“We have received correspondence from almost 150 parents who are worried about this, and we’re trying to advise them on what they can do,” he said.
Parents can appeal the decision, Mr Clarke said, and the advocacy group is now advising them on how to do so.
At the Dail’s Public Accounts Committee on November 14, HSE officials could not provide answers to questions on how many of the 6,324 discretionary medical cards removed following review, were from children with Down’s syndrome.

Friday, January 10, 2014

Brothers and Sisters: Learning from Each Other

by Chris Burke from NDSS:
When I was little, my brother and sisters found it difficult to have a little brother with Down syndrome.  It was hard from the beginning because they didn’t expect anything of me.  But then I started learning a lot from them, and they started learning a lot from me too. They taught me how to understand certain things that I needed to learn – how to read, count and get to know my alphabet. They let me watch children’s television shows like Sesame Street, Mr. Roger’s Neighborhood and the Electric Company. My brother taught me to play basketball.  He has always been my coach.
My brother and my sisters always let me hang out with their friends when we were growing up. We grew up with their friends, and they got me involved.  JR, Ellen and Anne taught me love, support and encouragement.  They have always taken good care of me.  They showed me how to understand myself and stay true to myself, and made sure that I had the opportunity to be all I could be.
Now, all of us are doing fine; we are a family.  We are still helping each other, and we have fun conversations. I am very lucky to have all of my siblings.   If you have siblings or relatives with a disability, you need to give them a chance to be included; it’s called family inclusion. Be aware and understanding!

Thursday, January 9, 2014

DSR Episode #24: DS Achieves with Lito Ramirez

We had the opportunity to speak with Lito Ramirez, founder of Down Syndrome Achieves.  DSA’s mission includes Research and Funding, Political Advocacy and Education.  They have a new initiative called ONE21.  ONE21 seeks to fund the development of a dedicated and centralized DS biobank that will be open to all DS researchers, regardless of institutional affiliation.

A biobank is a large medical-grade refrigeration unit used to store high-quality samples of blood, tissue, DNA and other specimens researchers need to build a more thorough understanding of DS. It is a critical tool in advancing research in speech and communications, congenital heart defects, childhood leukemia, early cognitive decline, thyroid issues and others.

Without a biobank, progress for our loved ones with DS will remain slow.

Biobanks have been in use since the late 1990′s, and are already commonplace in other research areas, including autism, cystic fibrosis, Duchenne muscular dystrophy and psoriasis.

A biobank will go a long way toward advancing the science of DS faster, making therapies and best practices available sooner, so our loved ones with DS can live healthier, happier and more vibrant lives.
Lito is the father of a child with DS just like us.  We had a great time learning about DS Achieves, ONE21 and what a biobank is.  Now go to and click sign me up!


Download Down Syndrome Radio, Episode #24.
Better yet…subscribe, rate us and leave a comment on iTunes!

Wednesday, January 8, 2014

Down Syndrome detection with zero risk to mother and baby now in Mumbai

by Sumitra Deb Roy from The Times of India:
MUMBAI: A new revolutionary technology called NACE (Non-invasive Analysis for Chromosomal Examination) with more accuracy as compared to 1st trimester screening has been introduced in Mumbai. It can detect chromosomally linked diseases like Down syndrome with a simple blood test. It can precisely tell a pregnant mother, as early as three months into her pregnancy, whether her child has Down syndrome.
Currently, tests such as amniocentesis and Chorionic Villus Sampling (CVS) are widely used to detect any chromosomal abnormality but these tests are invasive and carry a high risk resulting in a miscarriage. The NACE test is performed on the cell free fetal DNA, which is extracted from the mother's blood via a simple blood draw, hence posing zero risk to the baby and to the mother. It is done from the 10th week to the 16th week of pregnancy, giving enough time for the woman to be counseled accordingly.

Tuesday, January 7, 2014

How I told my 7-Year-Old son he has Down Syndrome

by Kari Wagner-Peck from Daily Life:
A couple of weeks ago, I was interviewed by a local television station. The day they were coming to our house, I woke up at 2:48 in the morning, convinced I was going to have an anxiety attack. Part of the interview was to talk about Down syndrome.
Why did I wake in such a state? My husband and I had never told our 7-year-old son he has Down syndrome.
It isn't like the subject hadn't come up. But how would it help him to know at this age? Can a child -- any child -- understand what that means? Honestly, I find most adults, including educators and other professionals, know next to nothing about Down syndrome.
The other thing -- how would I do it? I can't adequately explain how Curious George is entrusted to navigate ships into New York harbor or why the tediously boring Caillou seems popular. How could I explain Down syndrome?
But, now I had to. What if some kid's parent from school saw me on TV? What if they talked about him having Down syndrome? Then, what if that kid said to our kid at school the next day, "So you have Down syndrome, huh?"
My heart was racing during the next couple of hours as I lay in bed trying to turn this thing in my mind. Finally unable to contain myself, I decided to wake my husband.
"We have to tell him today!" I yelled, sitting upright in bed.
"What's happening?" came my husband's voice from under the covers.
"Wake up! We have to tell him he has Down syndrome!" I said.

Monday, January 6, 2014

Pizzeria gives student with Down syndrome first job

On Monday evenings and Saturday afternoons, his family drops him off or stays for dinner while he works rolling silverware, wiping tables and opening the door to customers under the supervision of owner Marc Hanmer.
Hanmer has been in the restaurant business for 24 years and has hired employees with disabilities before in restaurants he previously owned.
“There are things we can do for them. There are menial tasks a lot of people don’t like to do, but task-oriented individuals don’t mind doing, like rolling silverware,” Hanmer said.
“We’re trying it out to see if it works.”
Schrupp started going to Brixx with his family in 2011 when the restaurant first opened because the menu offers gluten-free pizza. Schrupp has celiac disease, an autoimmune disorder irritated by gluten, so he pushes that particular menu item.
“We’ve got the best gluten-free pizza,” he said.
“Steven said he wanted to work there, and the owner said when he’s old enough, he can,” his mother, Susan Schrupp, said.
As an extrovert, Schrupp is getting along with both employees and customers.
“Customers like him, and we have a loyal base of customers here. A lot of people are starting to recognize him. He’s friendly,” Hanmer said.
The owner said Schrupp has to work on understanding when the tables are clean.
“It’s challenging, but he’s a good kid and deserves the opportunity to do something.”
Now that he has an income, Schrupp’s paychecks are going into the bank, and he said he does have a purchase in mind.
“I put it in my bank account. I want to buy a video game, and save it for college,” Schrupp said.
His mother added, “That’s what he wants to do. We’re looking at programs at Vanderbilt; they have a two-year program for people with disabilities. That’s his mission.”

Sunday, January 5, 2014

Photographer And Her Daughter With Down Syndrome Collaborate On Beautiful Portraits Of One Another

by Sara Gates from the Huffington Post:
At first, it was Irish-born photographer and mother Emer Gillespie who was behind the camera. But after Laoisha, her young daughter, starting asking to take the photos, she relinquished control.
Inspired by Laoisha's interest in the camera, the U.K.-based photographer launched "Picture You, Picture Me" in 2008, when Laoisha was 6 years old. Every few months, Gillespie pulls out the camera and the pair stages scenes of activities they like to do together, such as blowing bubbles or flying kites.
emer 9
Six years later, the photos they have created together comprise a unique mother-daughter series that features now 11-year-old Laoisha, who has Down syndrome, and Gillespie in parallel scenes, each captured by the other.
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Though the project has been a great way for the pair to spend time together, the photo sessions have also enabled Laoisha to advance her verbal and visual language skills by talking about what she wants for each photo.
"A lot of the images are Laoisha's ideas, for example, 'Bed Jumping,' 'Hair' and 'Make-up,' as she loves those activities," Gillespie told The Huffington Post. "Anyone who knows her will spot her interests and personality shining through in the subject matter. We both make suggestions for shoot ideas, but I will always start by first asking her if she wants to take photos, which so far has always been a yes, and then I will ask if she has any ideas or suggestions."
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Other images, like the photo of the mother-daughter duo in a school classroom, came at Gillespie's suggestion.
"Going to her classroom was my idea, as I wanted to take shots in an environment where she was more in control and more comfortable in than I was. So it really does vary from photo session to photo session," Gillespie explained.
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Usually Gillespie sets up the camera, a Mamiya RB 67, since it's a bit complicated, but she has begun teaching Laoisha the basics.
"I have been trying to teach her the light meter and how to load the film, so hopefully in time she will be able to operate the camera herself," Gillespie said.
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However, the camera does not focus itself automatically, so Laoisha has to make her own adjustments for each shot. That's why some of them, like 'Teeth Brushing,' are out of focus, Gillespie admits.
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"Picture You, Picture Me," which Gillespie has exhibited in New York, London and Portugal, is still ongoing. Gillespie assures HuffPost there will be more diptychs of her and her daughter to come -- as long as Laoisha is interested.
"This is a very personal, enjoyable project for us, so we take our time and only take photos when it feels right and we both want to," she said.
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Saturday, January 4, 2014

Columbia, SC Athlete Going to National Special Olympics for Swimming

Columbia, SC (WLTX)- People say he has the biggest heart in the Midlands. 
Travis Luthren, 24, was born with Down syndrome and is competing in the National Special Olympics in swimming. He started swimming competitively at just 8-years-old. 
The disability hasn't stopped him from inspiring others with Down syndrome.  
Travis is also a full-time employee at the Special Olympics and writes thank you cards to everyone who donates. 
He said his family has been supportive and behind him in everything.
"My mom and my grandmother are the only two ladies that raised me to be who I am today," Luthren said. 
The 2014 Special Olympics will be held in Princeton, New Jersey.
Special Olympics South Carolina provides year-round sports training for more than 20,000 children and adults with intellectual disabilities. 

Friday, January 3, 2014

Farm Kings Q&A: Lisa King on Motivating Children with Down Syndrome

On tonight’s all-new episode of Farm Kings at 9/8c, Joe tasks his mom Lisa and sister Bitty with running a fitness competition to inspire Freedom Farms’ loyal customers to buy local, eat healthy and get fit. The King family practices what they preach. The hardworking farm lifestyle comes naturally to them — but Lisa admits it’s sometimes a bit of a challenge to keep her youngest son, Ben, who has Down syndrome, active.
“Sometimes it’s very difficult to motivate children with Down syndrome,” says Lisa. “You give birth to nine other children who are very athletic, and then you have this child that you have to push and encourage. It’s a struggle for Ben.”
To make exercise fun, Lisa and Bitty started walking Ben down to the family pond with the incentive of feeding their ducks.
“Since we’ve started taking these walks with Ben, he’s lost about five pounds,” adds Lisa.”That just shows me that if I can inspire Ben to lose weight, I can inspire a whole group.” With Ben as her motivation, Lisa aims to inspire her family of customers to eat right and exercise. And she continues to find ways to challenge Ben to stay fit.
“I want to see [Ben] active,” says Lisa. “I want to see him healthy. I want him to outlive me.”

Thursday, January 2, 2014

man’s efforts link runners with partners with special needs

by Kevin Bonham from the Grand Forks Herald:
CROOKSTON — When Tim Boyle started running less than 15 months ago, his goal simply was to get off the couch.

“I had quit smoking and I found that all I was doing was sitting around, getting fatter,” the 41-year-old Crookston resident said last week. “All I did was trade one bad habit for another.”

It worked. He got into shape and started running competitively, entering the 5K in Sunshine Foundation’s Walk and Fun Run in Grand Forks in January.

After finishing the run, he posted a photo on Facebook.

Among those commenting on his photo was someone named Michael Wasserman, a 52-year-old California resident who has Down syndrome and bilateral hip dysplasia.

Wasserman is an artist whose works were featured this fall in an online gallery sponsored by the International Down Syndrome Coalition.

Boyle praised Wasserman’s artwork and commented that he would think of him when he runs.

Wasserman’s mother posted his response: “You can run for me any time.”

That’s all it took.

Later that month, Boyle founded Who I Run 4, a non-profit organization matching athletes with special-needs children and adults.

Spread the word

The group, which spreads its message through and a new website, has grown incredibly fast. Membership reached 10,000 last week, with members in all 50 states, Puerto Rico, and 26 countries.

Who I Run 4 already has matched more than 3,000 athletes with special needs partners.

“We’ve got 1,600 runners waiting for a buddy,” Boyle said.

So far, about 80 percent of the special needs membership is made up of children. Boyle hopes it grows to include more adults.

The athletes do not raise money for their online buddies. Rather, they provide inspiration by posting pictures, reports on their progress or awards and messages. They also tag the parents, so they can monitor the exchanges.

For athletes, it provides a sense of purpose — training or competing on the child’s behalf.

“They can dedicate an event or a workout to their buddy,” Boyle said.

For the special needs children and their families, it’s a new kind of connection.

“Parents say this gives them a sense of freedom,” he said. “This allows an outsider in and promotes awareness. There’s somebody outside that cocoon thinking about their child.”


Boyle’s initial inspiration came from a quote he read on Google: “I run because I can. When I get tired, I remember those who can’t run, what they’d give to have this simple gift I take for granted, and I run harder for them. I know they would do the same for me.”

He modified the quote, to serve as the motto for Who I Run 4: “God gave us the gift of mobility; others aren’t as fortunate. I run for Michael. Who do you run for?”

“We’ve got beginners. We’ve got veteran Boston Marathon runners,” Boyle said.

Among the members is the USA Inline Speed Skating World Team.

Another is Renee Baio, wife of actor Scott Baio, who probably is best known for his role as Chachi in the 1970s sitcom “Happy Days.” Renee Baio is president of the Bailey Baio Angel Foundation, which raises money for special needs children. It is named for their daughter.

Who I Run 4 officially supports four different organizations: Special Olympics; Make-A-Wish Foundation; International Down Syndrome Coalition; and the Hands and Feet Coalition.

The group, which is run by volunteers, has conducted one fund-raising event, so far, raising nearly $12,000. It plans to be a major sponsor of the Sunshine Foundation’s 2014 Walk and Fun Run.

Setting a goal

Boyle, who grew up in Crookston, was a police officer in Montgomery, Ala., from 2003 to 2006. These days, he works at Digi-Key, the electronics components distributor in Thief River Falls.

He spends at least 40 hours a week working with the charity and runs nine to 12 miles a week. He also has a small staff of volunteers.

His goal is to raise enough money to start paying a staff and, perhaps, to work it full-time himself.

He’s set an initial goal of raising about $40,000 annually — perhaps $1,000 each from 40 corporate sponsors. That would allow the non-profit charity to expand its fund-raising efforts.

“If we could get to that point, it would be just great,” he said. “This sure beats life on the couch.”

Wednesday, January 1, 2014

Beloved dog gets new lease on life

by Sarah Fay Campbell from the Times-Herald:
Lady, an 11-year-old Yorkshire Terrier, is Brian Ziifle's best friend.
The perky Yorkie has formed an incredible bond with Brian, a Coweta County resident who has Down Syndrome.
Four years ago, Brian moved into his own condo.
'We sent Lady with [Brian] to be his roommate, so he had someone waiting there for him when he came home,' said Brian's mother, Helen. 'They really have formed a bond that goes beyond owner and pet. He talks to her like a human and tells her everything, and she is really his best friend.'
In the days leading up to Christmas, Lady became very sick, and the Ziifles thought they were going to lose her.
The family prayed fervently, along with starting a prayer chain among friends. Brian even wrote a letter to Santa Claus.
Then the Ziifles received a Christmas miracle.
Lady woke up four days before the holiday, gasping for breath.
'We took her straight to the veterinarian and they sent us to an emergency place in Fayetteville,' said Helen. 'Lady was in respiratory distress and was suffering from renal disease.'
The emergency veterinarian staff discovered Lady had pneumonia and they suspected an enlarged heart, but couldn't see the heart clearly because her lungs were filled with fluid.
The tiny dog was put on oxygen and was given heart medication.
On Monday, Lady was placed in intensive care.
'The internal medicine veterinarian said she would do all she could do to get her home to Brian on Christmas Eve,' said Helen.