Wednesday, July 31, 2013

Breakfast at Tim's Place: hug #41,407

Started my day at the World's Friendliest Restaurant! Tim's Place! Oh Yeah!

This is my second time visiting and Tim's Place is awesome! As a parent of a child with Down syndrome this place is like a temple of inspiration. I feel really lucky to have experienced the Denver convention and now Tim's Place (

Tuesday, July 30, 2013

Global Down Syndrome Foundation Launches National Research & Medical Care Roundtable, Highlights 21 Pre-Eminent Experts in One "Phenomenal" Day

from The Global Down Syndrome Foundation:
The Global Down Syndrome Foundation held its inaugural national Research & Medical Care Roundtable on July 18, attracting top scientists and researchers focused on Down syndrome. The experts presented their work and answered questions for over 400 attendees, approximately 80 percent being self-advocates and family members, and 20 percent professionals.

The Global Roundtable was a full day of cutting-edge research and best-practices medical care organized into five parts: an NIH Keynote and four panels focused on Medical Care, Prenatal Testing, Basic Research, and Down Syndrome & Alzheimer's Disease. Each panel had five experts representing both research and medical care. Expert presenters included Dr. Fran Hickey, Dr. Peggy Kelley, Dennis McGuire, Ph.D., Dr. George Capone, Dr. Peter Bulova, Michelle Sie Whitten, Sue Joe, Dan Ketcherside, Dr. Kelly Lennon, Alberto Gutierrez, Ph.D., self-advocate and Global Ambassador DeOndra Dixon, Yvonne Maddox, Ph.D., Roger Reeves, Ph.D., Katheleen Gardiner, Ph.D., Dr. William Mobley, Ph.D., John Crispino, Ph.D., Tom Blumenthal, Ph.D., Dr. Ira Lott, Jorge Busciglio, Ph.D., Dean Hartley, Ph.D., and Huntington Potter, Ph.D.

"The Global Roundtable was -- in a word -- phenomenal," said Cyndi Johnson of Down Syndrome Family Connection in Bloomington, Ind. "I came as the sole representative of a small Down syndrome group with hopes to gather information to take back and share with other families. While that certainly happened, what really caught me by surprise was that I gained information that gave me a plan of action for some of the chronic medical concerns my own daughter is facing. I have a renewed sense of purpose with my daughter's physical and mental health at the center. The panelists were a wealth of knowledge combined with experience, wisdom and care that was positively energizing."

Monday, July 29, 2013

Boy with Down syndrome, 6, left to die because of tired doctor's mix-up

by Keith Kendrick from Parentdish:
A six-year-old boy with Down syndrome died after a hospital doctor mixed him up with another child who had a 'do not resuscitate' order.

Jack Adcock was admitted to the Leicester Royal Infirmary with breathing difficulties, a raised temperature and high heart rate.

His condition deteriorated and he suffered a cardiac arrest. But the inquest into his death heard how a paediatric registrar stopped staff who were trying to save the little boy – and said she didn't check his identity because she was too tired after a long shift.

Dr Hadiza Bawa-Garba said: "I should have checked the face before stopping. But I had been working for 12 hours with no break."

Sunday, July 28, 2013

Basics of Down Syndrome free recorded Webinar

Do you remember seeing lots of invites for the D.A.D.S. & Global Down Syndrome Foundation webinar on Understanding the Basics of Down Syndrome & How You Can Help?

The Webinar is over but it was recorded and its available to you now for free. So please take a few minutes out of your day or you commute to listen and learn about the basics of Down syndrome and the latest medical updates from some of the most prominent medical professionals in the field!

Saturday, July 27, 2013

US Down Syndrome Clinic footprint

Here's a map of Down Syndrome Clinics in the US from the NDSS as presented at the GDSF Roundtable last week.

Friday, July 26, 2013

In a laboratory dish, researchers shut down extra chromosome that causes Down syndrome

Researchers at the University of Massachusetts Medical School have shown that it is possible to do what had once seemed unthinkable—shut down the extra chromosome that causes the developmental problems and intellectual disabilities in people with Down syndrome.

The surprising result—so far accomplished only with human cells grown in laboratory dishes—is the fruit of a daring, out-of-the-box approach by a scientist whose work has been shaped by her early experience counseling families of children with disabilities.
“It really is revolutionary, in terms of causing us all to rethink the one impossible thought—can you make, functionally, that extra chromosome disappear,” said Dr. Brian Skotko, co-director of the Down Syndrome Program at Massachusetts General Hospital, who was not involved in the new study. “I don’t think any of us thought it was possible or even within the current realm of scientific dreaming that we might one day be able to do it.”

Wednesday, July 24, 2013

Death of man with Down syndrome investigated by Department of Justice

DC News Weather Sports FOX 5 DC WTTG

From My Fox DC:
The Department of Justice is now investigating the death of a Maryland man with Down syndrome who died while in police custody.
The incident happened in Frederick back in January.
Investigators want to know if 26-year-old Robert Ethan Saylor's civil rights were violated.
Three off-duty Frederick County Sheriff's Deputies forcibly removed Saylor from a movie theater when he snuck back in without paying.

Mom of Man with Down syndrome talks about his death in Maryland Cinema

by Jeremy Meyer from The Denver Post:
Ethan Saylor simply wanted to see a movie one more time.
The Frederick, Md., man had just watched "Zero Dark Thirty" in a theater inside a mall and wanted to see it again.
Saylor, 26, had Down syndrome — a genetic condition that impairs physical growth and intelligence. His condition was likely apparent to the off-duty sheriff's deputies working at the mall on Jan. 12 who were called to remove Saylor because he hadn't paid for another ticket. But those deputies clearly didn't know how to help Saylor work through the issue.
Saylor's aide told them to wait it out. His mother was on the way and he just needed some time. She warned them not to touch Saylor, who could quickly become agitated.
Saylor's mother now believes her son was desperately trying to use his iPhone to figure out how to buy another movie ticket. He didn't carry cash.

Questions haunt family of man with Down syndrome who died in police custody

He was crying out for her.
“Mommy!” someone heard Ethan Saylor scream as three off-duty Frederick County deputies yanked the 26-year-old with Down syndrome from a movie theater seat and dragged him, struggling, toward the door.
Patti Saylor was already in the car on her way to the Regal Westview cinema after getting a call from her son’s 18-year-old aide, saying she was unsure what to do. They had just finished watching “Zero Dark Thirty,” and now Ethan didn’t want to go home. He had hit a Lenscrafter store’s window in protest.
Patti was maybe five minutes away when she called the aide, expecting to hear that Ethan had already calmed down, that the two were fine and eating at McDonald’s. Instead, she was told that Ethan was unconscious, not breathing and on his way to the hospital.
Only this week — after the Frederick County Sheriff’s Office released long-awaited documents detailing its investigation into Robert Ethan Saylor’s death Jan. 12 at the hands of its deputies — would his mother read the witness statements describing how her son had called out for her in his last moments.

Sheriff's Lawyer: Man With Down Syndrome Was Trespassing

A man with Down syndrome who died in police custody in a Frederick movie theater was trespassing when he refused to vacate a seat for which he had not paid, a lawyer for the Frederick County Sheriff's Office said Tuesday.
Baltimore attorney Daniel Karp said the three deputies who restrained Robert Ethan Saylor took action based on their training and their perception of the situation.
"The management didn't want him there without paying for a ticket. That's trespassing. That's a crime. Not a big crime, maybe - but that's a crime," Karp said in a telephone interview.

Aide to man with Down syndrome who died in theater had warned police, report says

from the Washington Post by Theresa Vargas:
Moments before off-duty Frederick County sheriff’s deputies tried to force a young man with Down syndrome out of a movie theater — a move that eventually led to his death — Robert Ethan Saylor’s 18-year-old aide warned them that he would “freak out” if they touched him.
“Next thing I know, there are I think three or four cops holding Ethan, trying to put him in handcuffs,” the aide told authorities, according to documents from the Frederick County Sheriff’s Department obtained Monday by the Associated Press. “I heard Ethan screaming, saying ‘ouch,’ ‘don’t touch me,’ ‘get off’ and crying. Next thing I hear is nothing.”

Tuesday, July 23, 2013

Shop's Facebook post made fun of people with Down syndrome

by Matthew Theunissen from The New Zeland Herald:
The Advertising Standards Complaints Board has ordered an Auckland mag wheel shop to remove a post on its Facebook page which makes fun of people with Down syndrome.
The post on the Facebook page for Mairangi Bay shop Platinum Wheels showed a person with Down syndrome edited into a Ford Falcon car with a caption reading: "Racing a Ford is like being in the Special Olympics. Even if you win you're still a retard."
A complaint was received which labelled the post "disgusting" and "beyond offensive", which the board upheld.
It ruled the post was likely to cause serious offence, taking into account generally prevailing community standards.
The image was not saved by the allowance for the use of humour and satire and the authority ruled it had not been prepared with a due sense of social responsibility.
The authority had to consider whether a Facebook post could constitute an advertisement and found that it could because the page had been created to promote the company.
The authority ordered Platinum Wheels to remove the post and today it appeared to have been taken down.
Platinum Wheels manager Nick Hoyle said they had not intended to cause offence by posting the image.
"I understand why there was a complaint laid and I can totally see why they've taken the action they have. No worries at all.
"From our end, we try to have a bit of fun with our Facebook, we're always posted things that are likely to get a reaction out of people and some people lap it up. So what do you do? If you're always trying to be PC for everyone out there then you're sort of letting society rule how you live your life."
He said he was sorry to anyone who took offence.
"We're not out there to make fun of people or categorise people or anything like that. When it comes down to it, we just saw it as an opportunity to have a bit of a laugh about the Ford-Holden relationship. Some people got upset about it and we're sorry about that. But for the handful of people that complained, 1600 out there thought it was hilarious and shared it."
He disputed that it was an advertisement at all.

Monday, July 22, 2013

Local author brings awareness to Down syndrome

by Lorainne De Loreto from The Tampa Tribune:
RIVERVIEW - The expression "God never gives you more than you can handle" is a mantra the Tompkins family lives by every day.

So much so that Riverview resident Lisa Tompkins recently published a book, "Why Are You Looking at Me? I Just Have Down Syndrome." Her daughter Lynn, now 22, has struggled with people's reactions to the disorder for years.

Already parents of five children, three whom they adopted, the Tompkins welcomed Lynn into their home with open arms. What they weren't prepared for was the ridicule she would get everywhere they went.

"For awhile it seemed that she was not able to understand the reactions people had to her and she seemed to be unaffected," Tompkins said. "Until one day she asked me a question that broke my heart. 'Mommy, why don't they like my face?' I knew at that point I had to do something to help people to understand."

Friday, July 19, 2013

NDSC Convention Schedule, Saturday, July 20, 2013

This is a summary of events for Saturday, July 20, 2013 at the NDSC Annual Convention in Denver, CO.

7:30AM - 3:00PM Registration Open

8:00AM - 6:00PM Exhibits Open

7:30AM - 12:30PM Kids' Camp Session 3

8:00AM - 5:15PM Youth & Adult Conference (lunch break 12:00PM - 1:30PM)

8:00AM - 5:15PM Brothers & Sisters Conference (lunch included)

8:30AM - 10:00AM Workshops

10:30AM - 12:00PM Workshops

12:00PM - 1:30PM Lunch on your own

12:15M - 5:00PM Film Festival

1:15PM - 5:15PM Kids' Camp Session 4

1:30PM - 3:00PM General Session

3:30PM - 5:00PM Workshops

5:30PM - 6:00PM NDSC Membership Meeting

6:30PM - 7:00PM Reception and Cash Bar

7:00PM - 9:00PM Banquet (by ticket only)

9:00PM - 11:00PM Dance

NDSC Convention Agenda Summary
NDSC Convention Home Page

Thursday, July 18, 2013

NDSC Convention Schedule Friday, July 19, 2013

This is a summary of events for Friday, July 19, 2013 at the NDSC Annual Convention in Denver, CO.

7:00AM - 7:00PM Registration Open

7:30AM - 12:30PM Kids' Camp Session 1

8:00AM - 12:30PM Pre-Conferences

9:00AM - 12:00PM Friendship Club Open House

12:00PM - 8:00PM Exhibits Open

1:00PM - 2:30PM Friendship Club Open House

1:30PM - 3:00PM Sharing Sessions

1:30PM - 5:00PM Film Festival

3:00PM - 8:00PM Kids' Camp Session 2

3:15PM - 5:15PM Youth & Adult Kick Off Party

3:15PM - 5:15PM Brothers & Sisters Get Acquainted

3:30PM - 5:00PM Sharing Sessions

6:30PM - 7:45PM Opening Session

8:00PM - 10:00PM Opening Reception and 3...2...1...Dance!

8:00PM - 10:00PM Adult Sibling Networking Reception

NDSC Convention Agenda Summary
NDSC Convention Home Page

GDSF Roundtable & NDSC Convention updates

Get updates from the GDSF Roundtable & the NDSC Convention from DSD on Facebook & Twitter!

Wednesday, July 17, 2013

GDSF Roundtable & NDSC Convention Schedule Thursday, July 18, 2013

This is a summary of events for Thursday, July 18, 2013 at the NDSC Annual Convention in Denver, CO featuring the Global Down Syndrome Foundation Research & Medical Care Roundtable.

7:00AM - 8:00AM Buses from Hyatt Regency Denver at Colorado Convention Center to Children’s Hospital Colorado (you must be registered)

8:00AM - 5:00PM Global Down Syndrome Foundation (GDSF) Research & Medical Care Roundtable at The Sie Center for Down Syndrome at Children’s Hospital Colorado,13123 E 16th Avenue, Aurora, CO 80045, Rooms: Mt. Princeton, Mt. Yale, and Oxford
8:00AM - 9:00AM Check-in, Continental Breakfast
9:00AM Welcome
9:15AM Medical Care Panel
10:50AM Break - Refreshments
11:05AM Prenatal Testing Update
12:00PM Lunch & Presentations - Boxed Lunches and Refreshments
1:00PM Basic Research Panel
2:35PM Break - Refreshments
2:50PM Down Syndrome-Alzheimer's Disease Panel
4:25PM Break
4:40PM Tour of the Sie Center for Down Syndrome at Children’s Hospital CO; Buses back to Hyatt Regency Denver at Colorado Convention Center

6:00PM - 9:00PM NDSC Convention Registration Open
7:00PM - 8:30PM First Time NDSC Convention Attendee Orientation
7:00PM - 8:30PM NDSC Convention Diversity Networking Social

7:30PM Colbie Caillat, Paramount Theatre for Musical Performance - Note: Performance is by invitation only. Registered participants of the Global Research & Medical Roundtable are automatically provided a non-transferrable ticket. Performance location is two blocks from the Hyatt Regency Denver at Colorado Convention Center, therefore no transportation is provided

NDSC Convention Agenda Summary
NDSC Convention Home Page

Thursday 7/18 GDSF Research & Medical Care Roundtable Schedule

The Global Down Syndrome Foundation is proud to announce the Global Down Syndrome Foundation Research & Medical Care Roundtable at the Children’s Hospital Colorado on Thursday, July 18, 2013.

The Global Roundtable, held at one of the nation’s top ten children’s hospitals and home to the Sie Center for Down Syndrome, is co-organized with the National Down Syndrome Congress and supported by the Down Syndrome Medical Interest Group. The Global Roundtable will feature nationally renowned scientists and medical professionals working to better the lives of people with Down syndrome. Topics will include sleep apnea, immune deficiency, leukemia, prenatal testing, cognition, and Alzheimer’s disease.
The morning of the Global Roundtable, bus transportation will be provided to and from the convention’s designated hotel, the Hyatt Regency Denver at Colorado Convention Center to the Children’s Hospital Colorado, departing from 7:00am. Breakfast, snacks and lunch will be provided during the Global Roundtable.
To make it even more exciting, we are also offering each Global Roundtable attendee a ticket to a private performance by Colbie Caillat at 7:30pm at the Paramount Theatre – just two blocks from the Hyatt Regency Denver at Colorado Convention Center.
Early-bird registration for the convention has ended but Global’s Christian Ransom Ball Scholarship Fund is offering a limited number of $50 scholarships on a first come first serve basis.

Key Locations
Hyatt Regency Denver at Colorado Convention Center
650 15th Street, Denver, CO 80202
Sie Center for Down Syndrome at Children’s Hospital Colorado
13123 E 16th Avenue, Aurora, CO 80045
Rooms: Mt. Princeton, Mt. Yale, and Oxford
8:00 am — 5:00 pm
Paramount Theatre
1621 Glenarm Place, Denver, CO 80202
7:30 pm — 9:30 pm

Detailed Schedule of Events
  • 7:00 — 8:00 am Buses from Hyatt Regency Denver at Colorado Convention Center to Children’s Hospital Colorado
  • 8:00 — 9:00 am Check-in, Continental Breakfast
  • 9:00 am Welcome Remarks
  • 9:15 am Medical Care Panel
  • 10:50 am BREAK – Refreshments
  • 11:05 am Prenatal Testing Update
  • 12:10 pm Lunch Presentations – Boxed Lunches and Refreshments
  • 1:00 pm Basic Research Panel
  • 2:35 pm BREAK – Refreshments
  • 2:50 pm Down Syndrome-Alzheimer’s Disease Panel
  • 4:25 pm BREAK – Tickets for Colbie Caillat Will Be Provided
  • 4:40 pm Tour of the Sie Center for Down Syndrome at Children’s Hospital CO & Buses back to Hyatt Regency Denver at Colorado Convention Center
  • 7:30 pm Paramount Theatre for Musical Performance

  • Tuesday, July 16, 2013

    Did Facebook Save an Unborn Child?

    by Daniel Burke from CNN:
    (CNN) – On Monday morning, a Catholic parish in Virginia posted an urgent message from its priest on Facebook.
    A couple was pregnant with a child diagnosed with Down syndrome, said the Rev. Thomas Vander Woude of Holy Trinity Catholic Church in Gainesville, Virginia.
    If they didn't find a couple willing to adopt the unborn child by the end of day, they would abort it, according to the priest.
    Within hours, hundreds of couples had contacted the church with adoption offers, according to Holy Trinity staffers.
    The parish had to bring in extra staff to field the phone calls flooding in from around the world, including the Netherlands, Puerto Rico and Canada, said Martha Drennan, the parish's director of Adult Faith Formation & Liturgy.
    In addition, Vander Woude received upwards of 600 e-mails, Drennan said. "It has to be well over 1,000 couples who were interested in adopting the baby," she said.

    Monday, July 15, 2013

    "The Crash Reel": Snowboarder Kevin Pearce's Rise and Fall

    Films that exceed expectations come and go, leaving audiences properly grateful, if not for much. Then there’s a documentary like “The Crash Reel”—about a star athlete whose career was cut short by a critical brain injury—which goes flying past all the clichés and treacle-soaked heroics embedded in this theme to a wondrously hard-edge life all its own. No small achievement when you consider that it’s a life that draws virtually all of its power from the film’s singular portrait of family bonds.
    The portrait is filled out by a remarkable two decades’ worth of footage of snowboarding champion Kevin Pearce and his friends and family. Everything in those pictures speaks to the passion he had for the sport—unlike any he’d found in schools and studying—for developing his skills at flips and spins on snowboards. He was young, barely into his teens, when he began to win one competition after another, and then one commercial sponsor after another. And finally, a surefire contender for membership on the U.S. Olympic team.
    He was the kind of goal-driven athlete who never stopped training, and lived for the effort—though for all that bottomless ambition, he and his pack of snowboarder friends exuded a joyful innocence that’s captivating. It’s what makes for the seductive power of the first half of the film, along, that is, with stunning scenes of snowy landscapes and of daredevils flying up and down steep slopes on rickety-looking snowboards.
    Still, when it comes to seductiveness the film (directed by Lucy Walker) offers nothing to equal the entire Pearce family of Vermont—Kevin’s father, Simon, a highly successful entrepreneur; his mother, Pia; and his three brothers. The youngest, David, is a riveting presence. He’s the family’s Down syndrome child, now a young man—urgent, full of passion for his adored athlete brother, the raw voice of anguish over Kevin’s accident that the other members of the family try to contain in themselves.
    In its picture of the family constellation lies all of the film’s strength, all testimony to its ambition, its capacity to fascinate with a revelation, an unexpected digression from the drama’s main focus—namely, the plight of its central figure, Kevin, the beloved son and brother, whose hopes for his career are now gone. And that’s not the only loss he’ll have to confront. The film’s final quarter provides a phenomenally detailed exposition of the damaging effects—some seemingly subtle, most all too obvious—that come with the kind of brain injury that Kevin Pearce sustained.
    Kevin’s father, Simon, reflects on his own inability to succeed at school—he was severely dyslexic—and on finding his self-regard and subsequent happiness in work. His own father had been wise enough to understand and had never opened a school report card. Mia, Kevin’s mother, recalls her initial fear—soon dispatched—that she might not be able to deal with a Down syndrome child. David, that child now nearly a man, reveals details of the unhappiness he feels when he thinks about his condition, a description impressive in its eloquence. Everybody here is, in one way or another, a central figure—which is to say quite a lot for this family picture.
    That’s not to suggest that Kevin Pearce’s fate doesn’t loom large—his story is the core of this penetrating chronicle, never devoid of life or a capacity for surprise.

    Boy with Down syndrome uses iPad to help him communicate

    by Courtney Smith from WTVM 9:
    Like many best friends, 7-year-old Hal Bradshaw and Sophie Snyder don't need a lot of words, their bond is rock solid.
    Hal has Down syndrome. He began signing as a baby, but verbal words remain a challenge.
    "You want the best for your children, you want them to be able to output to the world, not just input," said Hal's mom Samantha Bradshaw., GA News Weather
    Hal began lessons with Kelly Cadden, a speech pathologist at All for Children in Auburn. His family bought an expensive language output device, but it was complicated and Hal didn't like it.
    "We knew how much he loved playing games on the iPad, and so we started using it as a way of communication and he liked it and picked it up immediately," said Cadden. "He likes to carry it with him, doesn't like others to touch it, it is his voice, one he didn't have before."

    Sunday, July 14, 2013

    Sensory Friendly Film at Marquee Cinemas

    by Joe Hellriegel from WOAY ABC TV 50:
    BECKLEY - The Marquee Cinemas in Beckley are doing something special for the families affected by down syndrome, autism and other disabilities.

    Gallery 14 is teaming up with "Down With That," The Down Syndrome Family Support Group of Southern West Virginia for the "Sensory Friendly Films" program. Family members with autism, down syndrome or other disabilities will be able to move around and cheer during the movie. This is all to launch the first weekend showing of the new movie Despicable Me 2.

    "Sometimes you know, parents with special needs children don't really have the opportunity to come to a movie, they feel uncomfortable with the big crowds and everything," said manager Bill Favorite. "We'll leave the lights up a little but, turn the sound down just a little bit so it will be a good time for kids who normally dont get a chance to see a movie," said Favorite.

    Saturday, July 13, 2013

    Twitter attack on Collingwood player Clinton Young's brother

    by David Hurley from The Herald Sun:
    COLLINGWOOD star Clinton Young has been the victim of a Twitter attack by a man who made shocking comments about his brother, who has Down syndrome.
    Following the Pies victory over Carlton on Friday night, Young tweeted his thanks to supporters and referred to
    his brother, who was in the circle singing the club song with the players after the win.
    Young tweeted: "Great win by the boys tonight! Thanks for all the messages, Lachie loved the night too! Fair to say I needed the run, can't wait for next wk."
    A Twitter user replied: "Good to see your brother fitting in but I guess he would already lots of spastics at the pies."
    Catherine McAlpine, chief executive officer of Down Syndrome Australia, said: "It is really disappointing that some people still think it is acceptable that people with disabilities are fair game when it comes to ridicule and abuse like this."
    Young, 27, and Collingwood Football Club did not wish to comment on the incident.

    Friday, July 12, 2013

    Unaccompanied person with Down syndrome wreaks havoc on Saudi flight

    from Emirates 24/7:
    A Saudi man with Down syndrome travelling on his own wreaked havoc on a Saudi flight en route to Jordan on Sunday, after trying to strangle an Asian woman and attacking other passengers, a newspaper reported on Monday.

    The adult man also kicked the service trolley to send bottles and food all over the floor before grabbing a plastic knife and attacking another passenger, the Arabic language daily Sabq said, quoting passengers and crew members.

    The incident began when the crew members began serving dinner aboard flight 633 from Riyadh to the Jordanian capital Amman, the Saudi Sabq daily said.

    When they tried to serve that man, he kicked the trolley very hard, sending dishes, bottles and food on the floor and causing panic among many passengers, it said.

    Thursday, July 11, 2013

    Children's Book Focuses on Down Syndrome

    by Lauren Estes from The Cullman Times:

    Most children’s books are centered around characters overcoming obstacles, maybe a lost puppy finding its way home, or a brother and sister learning to share toys.

    “Sammy is Special,” a children’s book written by Tom Witschi, teaches a different lesson to its readers. The book’s focus is on a child, Sammy, with Down syndrome, who moves into a new neighborhood and impacts everyone he meets. Witschi  grew up with an older brother who had special needs and said he was the inspiration behind the story.

    “Sammy’s character is loosely based on my brother, Patrick, but I didn’t want the character to be specifically based on one person,” Witschi said. “For kids and even adults, it can be hard to understand why someone is born different, but God has his hand in that. When you can learn to look past someone’s disability, it can impact your life.”

    Wednesday, July 10, 2013

    What happened to Robert Ethan Saylor?

    WITH EVERY passing day, the appearance grows that Frederick County officials, especially the sheriff, Charles Jenkins, have something to hide in the case of a man with Down syndrome who died in a scuffle with law enforcement officers.
    The movie-theater confrontation between Robert Ethan Saylor and off-duty sheriff’s deputies over an unpaid $12 movie ticket occurred nearly six months ago. There has still been no adequate public accounting of the events surrounding this senseless incident, which was ruled a homicide resulting from asphyxia.
    Mr. Jenkins promised transparency, vowing that “all the facts will be presented when the investigation is complete.” What can he be waiting for?

    Tuesday, July 9, 2013

    Fewer barriers constrain those with Down syndrome

    Ski instructor Tim Norton was devastated when his daughter was diagnosed with Down syndrome shortly after her birth in 2006.
    He envisioned her growing up tragically disabled, the years ahead filled with darkness.
    But a chance encounter just a few months later changed his outlook on Down syndrome and the prospects for his daughter’s happiness.
    While skiing near his home in Westford, Mass., a gifted teen skier with Down syndrome, Melissa Joy Reilly, glided past at the crest of a hill.
    Norton had noticed her earlier but said nothing. “Melissa stopped in front of me and said, ‘Hello, how are you?’ I said, ‘Great. What a great night to be skiing.’”
    And, just like that, his life changed.
    “Without her even knowing it, without her even trying — it was quite remarkable — I got just the positive lift that I needed,” says Norton, whose daughter, Margaret, is now 7.

    Monday, July 8, 2013

    actor with Down syndrome to star in Bollywood film

    Mumbai-based Abuli Mamaji has from Down syndrome, but that isn't stopping him from starring in a forthcoming Bollywood film.
    Abuli will be playing a character close to his real self on screen. Director Nikhil Pherwani has cast him as a protagonist with the genetic disorder, in his film tentatively titled Ahaan.
    While films based on various illnesses have lately become popular in Bollywood, this is probably the first time that a person suffering from an illness has been cast to play the character on screen.
    "The film is about a new beginning for Ahaan, the character played by Abuli. The message I want to give through the unusual subject is that we should not shun the special adults in our society," Nikhil said.

    Sunday, July 7, 2013

    Japan firm to start testing drug to slow decline caused by Down syndrome

    from the Japan Times:
    A Japanese pharmaceutical firm will begin therapeutic testing of a drug it hopes will slow the decline in quality of life for some people with Down syndrome as they age.
    The firm said Monday it will begin trial tests of its Aricept donepezil hydrochloride drug, commonly used to treat some of the symptoms of Alzheimer’s disease, on people between the ages of 15 and 39 who have Down syndrome.
    Down syndrome is a congenital disorder frequently characterized by diminished mental faculty and physical abnormalities, including distinctive facial features.
    It is caused by a chromosome defect and is proportionately more common in people born of older mothers.
    From the midteens onward, roughly 6 percent of people with Down syndrome lose physical coordination, experience sleep disorders and become more withdrawn, a spokesman for drugmaker Eisai said.
    “This testing, if effective, might show that the medication could improve their condition and help improve the quality of their lives,” the spokesman said.
    It could also ease the burden on their caregivers, he added.
    Some of the symptoms experienced by people with Down syndrome are common to some sufferers of Alzheimer’s, for which Aricept has long been prescribed.
    The testing will initially involve 10 hospitals nationwide, with dozens of people in the affected age group.
    The program will continue for up to four years, the spokesman said.
    The drug is not intended to treat the underlying condition, he said, rather it is hoped it will target some of the symptoms.
    Around 1 in every 830 newborns in the United States has Down syndrome, according to the National Institutes of Health. This equates to about 250,000 people in the country, it says.

    Saturday, July 6, 2013

    FDA-approved formoterol drug improves cognitive function in mouse model of Down syndrome

    from News Medical:
    An existing FDA-approved drug improves cognitive function in a mouse model of Down syndrome, according to a new study by researchers at the Stanford University School of Medicine.
    The drug, an asthma medication called formoterol, strengthened nerve connections in the hippocampus, a brain center used for spatial navigation, paying attention and forming new memories, the study said. It also improved contextual learning, in which the brain integrates spatial and sensory information.
    Both hippocampal function and contextual learning, which are impaired in Down syndrome, depend on the brain having a good supply of the neurotransmitter norepinephrine. This neurotransmitter sends its signal via several types of receptors on the neurons, including a group called beta-2 adrenergic receptors.

    Friday, July 5, 2013

    Student with Down syndrome makes history at Lee University

    from WRCB TV NBC:
    CLEVELAND, TN (WRCB) - Lee University student Corey Moore is making big waves.
    "A doctor that was kind of ignorant told me your son is probably never going to walk or talk," says Krisi Moore. | Chattanooga News, Weather
    Moore introduced us to her son Corey, who is not only walking and talking, but in the gym two days a week working a part time job. If that isn't enough, he's the first ever student with down syndrome at Lee University.
    "Well it's better than laying around the house," says Corey.
    Groundbreaking yes - but no big deal if ask Corey.
    "Down syndrome is just an extra chromosome. I'm no different than anyone else."
    Different only in the way he chooses to tackle life.

    Thursday, July 4, 2013

    Pujols hosts arcade night for foundation

    by Alden Gonzalez from
    "This is my daughter, Isabella," Albert Pujols told more than 200 parents and kids in the second-floor arcade of the ESPN Zone in Downtown Disney late Monday afternoon. "She's 15 years old, and she's perfect. Sometimes she doesn't clean up her room, but that's OK."
    Isabella has Down syndrome. Anybody who is in any way associated with Pujols, or has followed his career, or wants to understand what he's all about, knows this by now. He doesn't hide it; he embraces it, shows it off, uses it as a platform to get the word out and has basically built the Pujols Family Foundation around her.
    During the last six years of his St. Louis tenure, Pujols used the interactive events of his charity to connect with other people with Down syndrome.

    Wednesday, July 3, 2013

    Understanding the Basics of Down Syndrome Research - and how you can help

    D.A.D.S. Webinar: 
    Understanding the Basics of Down Syndrome Research - and how you can help

    Tuesday, July 9, 2013 7:00 PM - 8:30 PM EDT
    We know what it means to have a person with Down syndrome in our lives, but what does it mean to have Down syndrome? Even though we're aware of the definition - three copies of chromosome 21 instead of two - there's a lot still to learn about why this "triplication" occurs.

    What kind of therapies, medications or strategies may be on the horizon to help improve the lives of people with Down syndrome? Whether it's cognitive delay or one of the many other conditions or diseases that our kids are prone to, what are the hopes for how research can help, and what can we as dads do to help?

    Join D.A.D.S. and the Global Down Syndrome Foundation as we cut through the complexity of the science to show what's going on in the world of Down syndrome research and how it can affect your family.

    This informative webinar will feature two leading scientists from the Linda Crnic Institute for Down Syndrome:
    Tom Blumenthal, Ph.D.  
    Executive Director
    Huntington Potter, Ph.D.  
    Director of Alzheimer's Research
    Blumenthal and Potter will discuss what research is going on, what research is possible and what it all means to you. There will be time for questions and answers, so don't worry about any information going over your head.

    Sign up for you or your D.A.D.S. group now by going to

    There's no charge, and we hope you can join us for what's sure to be an enlightening and informative evening. So don't wait - sign up today, and we'll see you on July 9!

    Tuesday, July 2, 2013

    Therapy for boy with Down syndrome 'stopped for weeks'

    UK - A five-year-old boy with Down syndrome has had his specialist therapy cut because of staff shortages, his mother has claimed.
    Zach Broxham, from Yealmpton, in Devon, is entitled to specialist speech and language therapy.
    His mother, Sam, said the service was cut when therapist hours were reduced.
    Virgin Care, which runs Devon's integrated children's services, said they were "committed to putting this right".
    Ms Broxham said Zach may now need to be taken out of his mainstream school in Plymouth. He has a statement for six 30-minute sessions of therapy per school term.
    She said: "He's had two sessions this term and he will not be getting any more.
    "They [Virgin Care] have said they cannot provide any more until the end of July.
    "If he doesn't get the therapy now, what alternative is there, but a special school?"
    'Fully entitled'
    Ms Broxham said the service helped Zach to learn his verbs, letters and numbers, so he "could do well in school".
    She said the therapist, who worked four-days-a-week before going on maternity leave, was replaced with someone who worked one-day-a-week.

    Monday, July 1, 2013

    MILLER: The American Gun Owner - a brother with Down Syndrome

    If you only follow liberal media and listen to President Obama, it would be easy to believe that gun owners are all bitter clingers, reckless hicks or criminals. 
    The truth is that the 100 million gun owners in America are among the most responsible, patriotic, family-oriented citizens in our nation. 
    We’ve been inundated with almost 1,000 photos so far that show Americans — men and women, young and old — exercising their Second Amendment rights. 
    (Every photo submitted will be published. To do so, email a high-resolution version by July 9 to
    Along with the photos, many people have written notes explaining why they chose to get firearms and how they use them. I have been so overwhelmed with emotion by these powerful stories, that I decided to ask permission from the contributors to publish some in The Washington Times. I’m grateful to those who agreed. 
    This series, “The American Gun Owner,” will help illuminate the positives of gun ownership that are rarely seen in the media. My first story is about two brothers. 
    Daniel Parvin, 26, sent me a photo of his younger brother, Sam, who has Down Syndrome, shooting a .22 rifle. 
    “I don’t care if you graduated from Harvard, or if you have Down Syndrome, there is nothing dangerous or intimidating about a gun unless you are uneducated and uninformed,” Daniel wrote to me.  
    The Parvin brothers, who are just 18 months apart, grew up around guns. They lived in Texas until Daniel was 10 years old, then moved to Florida, where they still live. Their father, who had a safe full of firearms, taught the boys when they were very young to never touch or pick up a gun. 
    “When Sam and I were kids, maybe five or six, we were running around outside and found a gun in the bushes. We immediately ran inside, got my dad, who then notified the police. I never did learn what happened to the gun or where it came from, but we knew to never touch them,” Parvin wrote to me. “As we got older, we learned how to shoot, and how to properly and safely handle firearms.” 
    Sam, 24, lives with Daniel now. “He knows where I keep my .40 [caliber Springfield XD handgun], but he also knows to never touch it,” Daniel said. “In the case that I am injured and can’t use it, I know that he can because we have taught him how to fire a gun and how to do it safely.”
    Daniel said that Sam enjoys shoots with him for sport. “He loves going with the boys out to the old dirt pit and shooting at clays or old cans for that matter.” 
    I cried when I read Daniel’s first email. I replied that I was honored to know to know such great Americans. 
    “We are just simple people who love God and love this country,” Daniel responded. “We were raised to love the Lord, love our mama, and love the freedoms and rights that this great country provides.”