Wednesday, February 29, 2012

2012 World Down Syndrome Day Conference UN Headquarters NY


The first official World Down Syndrome Day (WDSD) will be celebrated at the UN Headquarters in NY, on March 21 2012 (3/21), with the Conference “Building Our Future”.

The event is sponsored by the Missions of Brazil and Poland to the UN and co-organized by Down Syndrome International, UN Secretariat for the Convention on the Rights of Persons with Disabilities and UNICEF with the collaboration of the Brazilian Federation of Associations of Down Syndrome (FBASD), Down España, Down Syndrome Research and Treatment Foundation (DSRTF)National Down Syndrome Center (NDSC)National Down Syndrome Society (NDSS) , and Special Olympics .

Inclusive education, human rights and political participation, independent living, how to work with the media and research are some of the topics that will be discussed.
Check the Program:

World Down Syndrome Day (WDSD) – “Building Our Future” 3/21 – Conference Room 2 – UN – NY– 10 to 2:30
10h to 10:30h – Opening
Welcome and Introductions Penny Robertson OAM, Chair of Board, Down Syndrome International (DSi)
UN Secretary General Ban-Ki Moon – Message on WDSD (to be confirmed)
Head of Brazilian and Polish Missions
Daniela Bas – Director of Division for Social Policy and Development (DESA), UN
Co-sponsor Organizations

1) 10:30h to 11h – UN Convention on the Rights of Persons with Disabilities (CRPD) and Inclusion – The Importance of Global Coordination Effort to Socialize the Convention
Rosangela Berman-Bieler – Senior Adviser on Children with Disabilities, UNICEF
Penny Robertson – Promoting inclusion in schools in Indonesia
Shona Robertson – Australia – Self-advocate – My education… my life.
Beatriz Paiva – Brazil – Self-advocate – Carpe Diem Association – Co-author of book on communication accessibility

2) 11h to 11:30h – Human Rights and Political Participation of Self-Advocates
Akiko Ito – Chief of the Secretariat for the Convention
Maria Alejandra Villanueva Contreras – Peru – Self-advocate– Fighting for her right to vote
David Egan – US – Self-advocate – Lobbying for his rights at the US Congress
Ester Nadal Tarrago – Spain – Self-advocate who participated on book on the Convention

3) 11:30h to 12:30h – Changing Society Attitudes – From Neglect and Institutionalization to Protagonist and Living in the Community
Rose Mordi – Nigeria – President of Down Syndrome Association Nigeria
K.S. Sripathi – India – State Chief Information Commissioner, Tamil Nadu Government, Down Syndrome Association of Tamil Nadu
Jason Kingsley – USA – Self-advocate, co-author of book “Count Us In: Growing Up With Down Syndrome”
Emily Perl Kingsley – USA – Mother, writer activist, author of “Welcome to Holland” – NY
Tom Forester – USA – Director of Residential Services – Association for Children with Down Syndrome/ACDS, Long Island, NY
Michael Brennan – USA – ACDS Group Home Resident

4) 12:30h to 1:00h – The Power of Media – A Guide to Work with the Media to Promote Inclusion
Michelle Whitten – USA – Global Down Syndrome Foundation – How to get media’s attention In a positive, constructive way
Patricia Almeida – Brazil – MetaSocial Institute– Brazil’s experience with WDSD and inclusive actions in collaboration with the Media
Tathiana Heiderich – Brazil/Holland – Self-advocate on her experience as a TV reporter

5) 1:00h to 2:00h – Care, Treatment and Research – What’s new on the DS front
Dr. Jose Florez –Director, Mass General Hospital Down Syndrome Clinic; Director, NDSC; Clinical Advisory Board, NDSS
Dr. Brian Chicoine – Medical Director, Adult Down Syndrome Center, Lutheran General Hospital; Scientific Advisory Research Group, DSi
Dr. Dennis McGuire – Director of Psychosocial Services, Adult Down Syndrome Center, Lutheran General Hospital; Scientific Advisory Research Group, DSi
Dr. Edward McCabe – Executive Director, Linda Crnic Institute for Down Syndrome
Margie Doyle – Down Syndrome Research and Treatment Foundation (DSRTF) – Latest on research and how to help studies move faster

2:00h to 2:30h – Launch:
1) DSi 2012 WDSD Global Video Event
2) New WDSD Website
3) DSi UN Convention Global Outreach Programme
4) Book “Change the way you speak and I will change my way of understanding”- By Carolina Yuki Fijihira, Ana Beatriz Pierre Paiva, Beatriz Ananias Giordano, Carolina de Vecchio Maia, Carolina Reis Costa Golebski, Claudio Aleoni Arruda, Thiago Rodrigues, from Carpe Diem Association, Brazil
5) Book “The United Nations International Convention on the Rights of Persons with Disabilities commented by its Protagonists” – By Down España

2:30 – Closing
Organizers – Patricia Almeida and Jessamy Tang, Members of the Board of Trustees – Down Syndrome International

Participants from all around the world are welcome, especially those with Down syndrome.
There is no cost for registration. Confirmation to attend the event can be made by the email
Please inform name, email, age, nationality, relation to Down syndrome (self, parent, relative, professional, teacher, student, friend or other-specify), document number (passport, driver’s license, student´s ID), date of birth, address, whether you have a disability and what kind and if you need a disability-related accommodation or service.
Only participants with their names on the list and an ID will be allowed in the building. Space is limited.

About Down syndrome
Down syndrome is a naturally occurring chromosomal arrangement that has always been a part of the human condition, being universally present across racial, gender or socio-economic lines, and affecting approximately 1 in 800 live births, although there is considerable variation worldwide. Down syndrome usually causes varying degrees of intellectual and physical disability and associated medical issues.

About World Down Syndrome Day
World Down Syndrome Day (WDSD) has been established by Down Syndrome International and celebrated since 2006 and observer in over 60 countries in the world. It is held on March 21st (21/3) to signify the uniqueness of the triplication (trisomy) of chromosome 21 which causes this genetic ocurrence.
The aim of the day is to raise awareness and understanding about Down syndrome, and to promote the inherent rights of persons with Down syndrome to enjoy full and dignified lives and be active and valuable participants in their communities and society.
A resolution to designate 21/3 as “World Down Syndrome Day”, to be observed every year beginning in 2012, was adopted by consensus by the United Nations General Assembly in December 2011. The resolution was proposed and promoted by Brazil, and co-sponsored by 78 UN Member States. From 2012 onwards, the date will be celebrated by all 192 UN countries.

For information on Down Syndrome:

For more information on WDSD: visit DSi website.

To know about the resolution process at the UN, visit:

3/21 – 10h – “Building our Future” – UN Headquarters in NY – Conference Room 2 – Confirmations:

Pick up a WDSD badge for your Facebook Profile:

Buy your WDSD DSi’s official logo  T-shirt, mug and bag:

Tuesday, February 28, 2012

2012 Buddy Walk on Washington update

The Buddy Walk on Washington begins tomorrow with planning sessions and continues into Thursday with Congressional visits.

Key initiatives being discussed with members of Congress and their staff are:
  1. Sponsorship of the Achieving a Better Life Experience Act (ABLE)
  2. Increasing Down Sydrome NIH Research Funding & Down Syndrome Research Infrastructure
  3. Joining the Congressional Down Syndrome Caucus

from the D.A.D.S. National Update:

What’s new in the 2011-2012 ABLE Act?
  • This is the third Congress that the ABLE Act has been introduced and there have been some specific changes that were made to the bill for this Congress. Some of the changes would result in providing more flexibility in the account along with a clear path to bring the accounts to the marketplace. Others have been added to help bring down the costs to the federal budget. Most importantly, all of the changes give the bill a much better chance to passing into law.
  • The resulting "ABLE" account would now fall under the 529 program. That means that the tax free, fraud protection, account limits, reporting provisions and rollover provisions that apply to 529’s would now apply to the ABLE account.
  • A provision was added that suspends the beneficiary’s SSI check during any period of time the account has assets over $100,000. It is important to note that although the payment is suspended the individual does not lose their eligibility
  • to receive the payment, so that when the assets are spent down it can be reinstated.

Monday, February 27, 2012

NDSC, NDSS and GDSF Respond to Decrease in NIH Funding

2011 National Institutes of Health Report Shows Down Syndrome Remains the Least Funded Genetic Condition

On Monday, February 13, 2012 the National Institutes of Health (NIH) published the fiscal year 2011 research funding for Down syndrome. The funding numbers decreased from $22 million in 2010 to $20 million in 2011 out of a total $31 billion budget. The 2010 funding levels already equated to Down syndrome being the least funded genetic condition by the NIH, something many Down syndrome organizations have been trying to reverse.

In a joint statement by the National Down Syndrome Congress, National Down Syndrome Society and Global Down Syndrome Foundation, the Down syndrome community expressed its disappointment in the decrease.  

We are very disappointed the funding levels for research from the NIH have not increased, but in fact decreased. Prominent scientists believe the research for improving health and cognition is extremely promising.

The Down syndrome community feels strongly about better medical care and outcomes for people with Down syndrome. Mainstream Americans overwhelmingly support federal funding for Down syndrome, as evidenced by a 2011 poll.

While funding for other conditions such as Fragile X and Cystic Fibrosis increased, funding for Down syndrome at the National Institutes of Health is significantly less and has plummeted since 2000, as evidenced by numbers published by the NIH.

People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, childhood leukemia, thyroid conditions, and Alzheimer's disease. Researchers are studying proteins related to human chromosome 21 and Alzheimer's disease that would reduce the level of the protein and lead to improvements in cognition for individuals with Down syndrome. While these groundbreaking developments, supported primarily by private funding, are positive achievements, both government funding and clinical research infrastructure support are vital to our efforts to translate research achievements into real treatments and therapies.
We hope given these realities that research funding benefiting the lives of people with Down syndrome will increase at the NIH. We are grateful for the funding that has been provided so far and will continue to collaborate with the NIH in meeting our collective goals for increased funding.

"Actors with Down Syndrome" article by Entertainment Weekly

Entertainment Weekly recently published an article titled "Actors with Down Syndrome." Be sure to pick up a copy and leave comments for the great work done by Entertainment Weekly and a big thank you for the amazing efforts of Gail Williamson and Down Syndrome in Arts & Media and be sure to like their Facebook page.

from Down Syndrome in the arts and media (

about DSiAM:
After years of supplying talent with developmental disabilities to casting directors in Hollywood for films and television and across the U.S. for commercial advertising and industrial films, media activist and consultant Gail Williamson has created a website just for talent who have Down syndrome or other developmental disabilities.  Down Syndrome in Arts & Media, DSiAM pronounced “D.S. I am” is now on line and collecting talent for its data base. Williamson says, “There is so much talent out there and people are constantly looking for them, searching group internet sites and asking around, I thought the talent deserved a place to be located, sort of a one stop shop, to better show the world their abilities.”


Friday, February 24, 2012

A recent radio interview with Glee's Lauren Potter

from Blair Williamson's Facebook page - be sure to like it:

Glee's Lauren Potter chats with 97ZOK's Steve Shannon Show.

Thursday, February 23, 2012

The legacy of Kathryn "Kay" McGee a NDSC founder

from The State by Graydon Megan - Chicago Tribune:

When her daughter Tricia was born with Down syndrome in 1960, Kathryn "Kay" McGee refused to accept the conventional wisdom back then that the best course was to put the child in an institution.

"Medical advice was not to bring the baby home," said McGee's son Michael.

Instead, McGee took her daughter home and started the National Association for Down Syndrome.
 Today's news video "She said, 'This is not good enough,' " said Sheila Hebein, recently retired after 30 years as the group's executive director. "She gathered a group of like-minded parents and medical professionals to maximize the possibilities for our children."

McGee, 91, died of natural causes Thursday in her River Forest, Ill., home, her son said.
Born Kathryn Greene, she grew up in Chicago's Lincoln Park neighborhood. She graduated from what is now Chicago State University and taught briefly in Chicago Public Schools.

She married Martin McGee in 1943. By the late 1950s, the couple, then with three children, moved to River Forest. The birth of her daughter led her to start the association in her home.
"It takes your breath away when you first get a diagnosis of Down syndrome," said Hebein, who has a son who was born with the condition.

McGee and her husband were determined to explore every possibility for their child and for others with the syndrome, Hebein said.

"Kay reached out. They had meetings in their home," Hebein said. "She had such energy and was determined that Tricia and other children were going to have a good life."

Her other children also helped. "We were warned everybody would have to pitch in," her son said.

As a teenager, Tricia sometimes answered the phone line reserved for calls from new parents of Down syndrome children and took messages. Those parents were often surprised and heartened when McGee told them that her daughter with Down syndrome had answered their call.

McGee recruited nurses and other hospital personnel to pass along the association's phone number to parents of children born with the condition, along with information about options beyond institutions, her son said.

McGee's challenge was daunting, Hebein said. In those days, educators and others understood little about Down syndrome or the abilities of the children, she said.

"She saw each child as having his or her own gifts and challenges and encouraged parents to build on those gifts," Hebein said. "Now our kids are in regular schools - they're artists, they're athletes."

In addition to her work with the association, McGee was a founder of the National Down Syndrome Congress. The Georgia-based organization was begun in 1973 as a national resource for people with Down syndrome and their families.

"She had an impact way beyond Illinois," Hebein said.

By the mid- to late 1970s, McGee stepped back from daily operations of the association to focus on long-term concerns for people with Down syndrome. She became active with such groups as Misericordia Heart of Mercy, the Chicago home for children and adults with developmental disabilities where her daughter Tricia now lives.

"Kay became a very active member of our family," said Misericordia's director, Sister Rosemary Connelly. "So vibrant, life-giving, she was a gift to any organization."

In addition to her son and daughter, McGee is survived by another daughter, Jan Barnes; another son, Martin; and five grandchildren. Her husband died in 2000.

Wednesday, February 22, 2012

Sarah Gordy plays Lady Pamela Holland on “Upstairs Downstairs”

from Disability Scoop by Michelle Diament:
A British actress with Down syndrome who appears on a popular BBC show is attracting acclaim from viewers around the world. Sarah Gordy, 30, plays Lady Pamela Holland on the drama “Upstairs Downstairs.” The 1930s-era show focuses on a wealthy London family and their servants. Gordy’s character is positioned as the sister of one of the show’s leading men who spent years in a mental institution because of the stigma associated with Down syndrome at that time. The actress says she appreciates the platform the role has given her to show the public what those with Down syndrome are capable of.                

from The Argus by James Wallin:
An actress has called herself a pin-up girl for those with Down’s syndrome after landing a role in a major TV series. Sarah Gordy, from Lewes, plays Lady Pamela Holland in the hit BBC drama, Upstairs, Downstairs. Despite receiving international attention for her starring role the 30-year-old remains committed to her charity work in Sussex. Miss Gordy, who has previously appeared in Casualty and Peak Practice, plays a pivotal role in Upstairs, Downstairs, as the long-lost sister of central character Sir Hallam, played by Ed Stoppard. Her character has been hidden away in a mental asylum because of the shame her Down’s syndrome would bring on the family. Miss Gordy said she relished the chance to challenge attitudes towards the syndrome. She said: “I know what it was like back then for Pamela and I cry for her. It makes me sad to compare it with my life. “I don’t see myself as a campaigner for Down’s syndrome in my career. I play characters and that is what I love. But I do work with disabled charities and like to think I can help people. “I get a lot of messages from people in America who are fascinated by this character and her experiences. It seems like I’ve become a bit of a pin-up girl for Down’s syndrome.”

from Daily Mail by Elizabeth Sanderson:
Her character’s reunion with her beloved brother, Sir Hallam, formed the heart-rending finale to the first series of Upstairs Downstairs and provided a stark reminder of the way things were done ‘back then’. Hidden away in a mental asylum because her Down’s syndrome would bring shame on the family, Lady Pamela Holland lived a solitary half-life with only her cherished photographs for company. Tonight, viewers will see her returned to her rightful home, 165 Eaton Place, as the revival of the BBC drama returns to our screens for a second series.
Much is riding on the show – there have been inevitable comparisons with Downton Abbey – and it’s hoped that Upstairs Downstairs, like its ITV counterpart, will be commissioned for a third series. And no one is hoping that happens more than Sarah Gordy, who plays Lady Pamela. As any actress would be, she is delighted to have a major role on prime-time television, but it also means so much more. For Sarah, who, like her character, has Down’s syndrome, this marks a milestone in an already extraordinary career. More delicate than she looks  on screen, Sarah is 5ft with pale, twinkly blue eyes, fresh skin and  a smile that enchants everyone she meets. Now in her early 30s and utterly guileless, she does not hide her delight at her newfound stardom. ‘It’s great,’ she giggles, sipping on a glass of champagne – her favourite tipple. When she is working away, her mother always keeps an emergency bottle in her suitcase.

Tuesday, February 21, 2012

Zac Brown's Camp Southern Ground to include all kids

from My Fox Atlanta by Doug Evans:

Country music star Zac Brown is building a 500 acre camp for special needs kids.
The musician has long dreamed of building a camp for special needs kids and he is on course to see it the reality of Camp Southern Ground.

In video provided to us by his charity, Brown talked about his passion for helping children.

Camp Southern Ground's executive director Jean Peck says Zac first dreamed of building a summer camp when he was a camp counselor in the north Georgia mountains.

"The power of that, for him as a counselor, he says that that really made him what he is today. It's like his music and what he does as a country music entertainer is his passion, but this is really his dream," said Peck.

While Camp Southern Ground will be for all kids, the singer wants it specialize on children with special needs.

"When I was about 14 or 15, I thought one day I want to do this. I want to provide the kind of environment where kids can be positively influenced and where they can hopefully learn some things that they can carry with them for the rest of their lives," Brown said.

Brown donated 500 acres of prime pasture land in Fayette County. He spreads the word about his dream at concerts all over the country and his fans are responding.

Peck said the camp will include activities such as horseback riding, canoeing, fishing, arts and crafts and organic gardening.

Brown and his wife Shelly have four children and live not far from the camp. He said he looks forward to the day when he can come out to the camp and visit the kids.

"This is not the Zac Brown Camp. This is a camp that will live on long after I'm dead and gone," Brown said on the video. "The first time that I walk outside here and hear a group of kids singing through the woods -- that's what it's all about."

from Camp Southern Ground:

Letter from Zac Brown

To me, there is nothing more worthwhile than helping kids. I grew up working with kids while on staff at summer camps and remember how they were impacted during their visits. Their time at camp helped to make a difference in their lives and will last them a lifetime. Camp Southern Ground will work with special needs children while providing them with lodging and facilities to most effectively contribute to their rehabilitation. The highly trained staff will offer a wide variety of therapeutic activities that are designed to help stimulate the mind and body and encourage development, all in a beautiful setting. This is the year to get it started! Welcome to Camp Southern Ground...
-Zac Brown

Monday, February 20, 2012

Albert Pujols' charitable commitment

from the Los Angeles Times by Mike DiGiovanna:

Baseball is a game of endless numbers and statistics, but here's a line you've probably never seen before: From May 2005 through last May, Albert Pujols hit .527 (39 for 74) in 22 games, with 12 homers and 25 runs batted in, following events in which he interacted with people with Down syndrome.

"It uplifts the kids, but I think it uplifts Albert even more," said
Todd Perry, the Pujols Family Foundation chief executive who researched those numbers. "It's amazing how good he plays when he's around these kids."

Pujols, the former
St. Louis Cardinals star who signed a 10-year, $240-million deal with the Angels in December, is around one of those youngsters all the time.

The oldest of his four children, Isabella, 14, has Down syndrome. She was a toddler when Pujols adopted her after marrying her mother, the former Deidre Corona, in 2000.

"From the moment he met her," Deidre has said, "she stole his heart."

Bella, as she's called, was the inspiration behind the St. Louis-based foundation that Albert and Deidre started on May 5, 2005 — 05/05/05 — Pujols' jersey number in triplicate.

The foundation's primary focus is to enrich the lives of families of children with Down syndrome and to minister to impoverished families in the Dominican Republic, where Pujols lived his first 16 years.

"That's part of the responsibility God has given me," Pujols said when he was introduced as an Angel in December. "Not just to perform on the field, but to give back off the field." (Through his agent, he declined to be interviewed for this story.)

Pujols received a relatively small bonus of $60,000 after being picked in the 13th round in 1999 and made $125 a week in his first minor league season.

But after winning the 2001
National League rookie of the year award and quickly establishing himself as one of the game's premier sluggers, Pujols in 2004 signed a contract that would pay him $111 million over eight years.

That gave him the financial means and platform he'd always wanted in order to make a significant impact away from the field.

"The focus on Albert was on home runs, runs batted in, but he wanted to talk about things that mattered to him — his faith, his daughter with Down syndrome, poverty and the way he grew up," Perry said. "That stuff was falling on the cutting-room floor. That was a huge reason for them starting the foundation."

In 2001, the Down Syndrome Assn. of Greater St. Louis consisted of an answering machine in a mother's home.

The Pujols foundation now operates out of a spacious suburban high-rise office, its walls covered by murals of Albert and Deidre working with young people in St. Louis and the Dominican, and serves 1,500 local families.

In 2011, the foundation staged 63 events that included father-son fishing trips and bowling nights, mother-daughter teas, cooking, theater, music and dance classes, all-star basketball and baseball games, and a celebrity golf tournament.

The highlight of the year is a prom, which last fall drew 500 young people, many of whom wore tuxedos and formal dresses, rented limousines and posed for portraits. Pujols rents a hotel ballroom for the event and tries to dance with everyone.

"Some of these kids are 25 years old and have never been on a date," Perry said. "They get to ask out a sweetheart, someone they have a crush on, and they have somewhere to go."

The foundation has expanded its efforts in the Dominican, joining forces with Compassion International to send in teams of doctors, dentists and optometrists on annual medical relief trips. The foundation's Project Sound Asleep delivers 70 to 80 mattresses a year to people with no beds.

Pujols has built baseball fields, hosted clinics and organized teams in several "batays," or shantytowns, filled with Haitian refugees and poor Dominicans.

"There's no infrastructure, electricity or flushing toilets — they live in tin and cardboard shacks with dirt floors," said Perry, who has made several Dominican trips.

"We bring free medical assistance to kids and adults. Everyone matters. They see Albert delivering mattresses; they see him with kids with lice, parasites and
scabies, and he's loving them like they're family."

Pujols didn't grow up amid such destitution in Santo Domingo, but he knows what it's like to go a day without food.

"This is my passion, and I believe this is what God is calling me to do," Pujols told "60 Minutes" last year. "That was me 25 years ago. I was one of those little boys with no hope, just a dream."

Though Pujols is moving west, the foundation has no plans to change its mission in St. Louis and the Dominican. Rather, it will expand to Southern California.

"We have an additional place to connect with the community, to affect more people," Deidre Pujols said. "We're never going to stop loving St. Louis. We have beautiful relationships with people there."

Perry, who met Albert and Deidre through church, has contacted Down syndrome officials in Orange County and Los Angeles to assess their needs.

"They're a lot more evolved than St. Louis was," Perry said. "It's exciting because we get to jump on the train while it's rolling. We don't want to duplicate their efforts. That's a waste of manpower and energy. We want to partner with them."

The Down Syndrome Assn. of Orange County has been affiliated with the Angels for years — its biggest annual fundraiser is a "Buddy Walk" day in Angel Stadium — but that connection is expected to now grow.

"Everyone is pumped to have a great athlete like Albert coming locally to us," said Kellie Perez, a senior director with the local association. "Not everyone knows he has a daughter with Down syndrome. Because of his celebrity status, it will help create more awareness."

Pujols is already receiving star treatment from the Angels, who open
spring training workouts on Feb. 20. Billboards are up around Southern California proclaiming Pujols to be El Hombre, The Man.

Perry can't guarantee Pujols will bring a championship to Anaheim, but he predicts the slugger will bring the same kind of commitment to the community that earned him the 2008
Roberto Clemente Award, which is given annually to the major league ballplayer who best exemplifies the game of baseball, sportsmanship and community.

A replica of the bronze Clemente statuette, which Pujols commissioned as a gift to Perry, sits on a coffee table in Perry's office.

"The Angels got one of the greatest hitters of all time, but the best part of this man is not what's on the field," Perry said. "What he'll do in a community, how he'll bring himself and his heart to Southern California will be the best gift of all."

Sunday, February 19, 2012

Hope Haven Down Syndrome Center's postive approach

from the Florida Times Union by Mary Kelly Palka:

Three and a half hours by car with one stop for a break.

That’s how long it takes the Mezzei family to get from Tampa to the Down Syndrome Center at Hope Haven Children’s Clinic and Family Center in Jacksonville at least once a year.

The Mezzeis believe the trip is worth every minute.

Because once they’re inside the Beach Boulevard center, they get tools that make the rest of the year much easier for their 5-year-old son Matthew, who was born with Down syndrome.

Families travel from down the road and around the world to Hope Haven to get assistance they say they can’t find in their own backyards.

In a society where parents of children with Down syndrome often hear what won’t be, Hope Haven points out what can be. Then it provides resources to the families to help make what once seemed impossible probable.

It’s made the nonprofit so popular that there’s often a wait of nine months to a year to get in for an team assessment focusing on the educational potential of the child.

Although Hope Haven offers a variety of therapies, including physical, occupational and speech, for children who can come in regularly, that’s not what brings the Mezzei family and others from out of town, state or even country. They may have great resources in their own communities, but some families are looking for second opinions and others are seeking additional support.

“We felt we were surrounded by great therapists,” mom Lisa Messei said. “None had specialized knowledge of Down syndrome.”

Laura Watts, the founder and program director for Hope Haven’s Down Syndrome Center, does.

In addition to a background in teaching, Watts is the mother of Jonathan, 24, who volunteers at Hope Haven a couple of days a week. Jonathan was born with Down syndrome.

Watts started the Down Syndrome Center in 1996 as a way to help children in all areas of their growth and development.

“We are strength-based and not weakness-based,” she said.

The idea is to find a child’s strengths and then take them to the next level, Watts said. She wants the parents she works with to understand their children can learn most anything other children learn. They just learn it a little differently and at a different pace.

In addition to Watts, there is another educational consultant, six therapists, a behavioral pediatrician and a behavior specialist. There are no standardized tests. And every child receives different recommendations, depending on their needs and strengths.

The team looks at everything about the child — and the family — that will help the child grow. Sometimes that’s helping deal with behavioral issues. Sometimes it’s helping with problems in the classroom.

For the Mezzei family, Lisa and John were concerned that Matthew had difficulty communicating his thoughts because his speech was unintelligible.

But Hope Haven staff knew through observations that Matthew understood what he was hearing, and he was capable of communicating. He just needed the tools.

Now Matthew uses a computerized device that allows him to answer questions by pushing buttons with pictures, sentences or words. It doesn’t just help Matthew at home; he’s also answering questions in circle time at school, his mom said.

They didn’t feel they were getting the same message about Matthew’s strengths in their own community.

Hope Haven “made us feel he is doing great,” Lisa Mezzei said.

Many parents come to Hope Haven for similar reasons.

“Often, when you have a child who is different, you get a long list of what your kids aren’t doing,” said Royellen Moore, of the Orlando area.

But she finds that the people at Hope Haven are more positive, and they focus on what her 6-year-old daughter is doing.

Much of the Moore’s focus in the early years of their daughter’s life was on her medical needs, including open heart surgery and epilepsy.

So when the family came to Hope Haven, Watts helped them focus on their daughter’s educational needs, showing them what the little girl was capable of doing.

For instance, it didn’t occur to them that their daughter could tell the difference between different types of animals. But when asked to find a frog, the little girl was quick to respond.

“She picked up the frog and brought it to us,” dad Michael Moore said. “Wow. I didn’t know that.”

There’s little doubt in the minds of those who walk through the doors at Hope Haven what makes this place different than any other.

“I think the gift’s Laura,” Royellen Moore said. “She took her personal experience and turned it into a resource for all of us.”

Some make the drive in a few hours.

Some make the trip in a day or two, including from Syria and Kuwait.

And then there are those who decide the trip is too much, and they just move to the area.

Doctors in Brazil told Juliana Eras de Borgia about Hope Haven when she was seeking help for her youngest daughter, 2-year-old Ana Carolina, said her stepfather, Angelo Moneta. De Borgia doesn’t speak much English. Moneta speaks some English, but it’s limited, so he communicated with the Times-Union via email.

The whole family moved to St. Augustine to be closer to Hope Haven at the end of 2011.
Moneta said he has been thrilled with the help Hope Haven has offered Ana Carolina and the rest of her family.

Moneta worried about how he should behave with Ana Carolina, and Watts explained to him what she tells everyone: Ana Carolina should be loved and cared for and educated like every other child.

“We all are happy knowing that Hope Haven Clinic and Mrs. Laura Watts will take care of our princess Ana Carolina,” Moneta wrote.

And he commented that the cost is reasonable. The prices vary, depending on the child’s needs and how many members of the therapy team they see, and there are financial aid and scholarship opportunities.

For parents and guardians, Hope Haven is a place where they can find support, answers and hope. For children, it’s more about adventure, encouragement and fun.

As physical therapist Kris Owen watched one day last week, Andi Wright, 5, of Orlando, climbed a ladder to reach the top of an indoor slide.

Owen wanted to make sure Andi was using the muscles she should — and suggesting ideas to mom Maureen Wright about ways she could help develop the muscles more.

And Andi’s mom wanted to talk to Watts about her transition into kindergarten.

That’s all great, but Andi didn’t care. She was ready to zoom down the slide.

“Ready,” said Owen. “Set.”

And then together, just before Andi started down the slide with a big smile on her face, she yelled out in unison with Owen:


Saturday, February 18, 2012

the heart pillow project

from Standard Examiner by Rachel J. Trotter:

Love was in the air as students from Weber State University and Ogden High School worked with members of the Morgan/Weber Down Syndrome Foundation to tie heart pillows for the cardiac unit at McKay-Dee Hospital.

The heart pillow project is in its third year. In the past, Scouts have worked with the foundation to create the pillows, but this year WSU student Kaitlyn East worked with students in her small group communication class as well as students in Youthlink, a youth service group. They tied and assembled approximately 140 small heart pillows for patients recovering from heart surgery.

The project not only helps those recovering patients but gives those with special needs the chance to do a little service as well.

“It’s been awesome because so often they have the focus on them and now they get to focus on someone else,” East said of the Down syndrome members.

East was excited about the project when she heard about it because she felt like it helped her community. She said that many Down syndrome individuals can suffer from heart ailments so the pillow project can hit close to home for them.

East and some of her classmates spent about a week cutting the fabric for the pillows so it would be easy to assemble last Friday night.

East’s classmates were glad to pitch in on the project.

“It’s pretty cool and it’s always good to help out other people,” WSU student Frank Otis said as he tied together a fleece heart pillow. He smiled as he watched some of the Down syndrome kids play with some of the pillows that had been tied.

“He’s having a great time,” he said, looking at one of the kids.

Susan McQuivey brings her daughter, who has Down syndrome, to the event each year.

McQuivey’s husband had cancer and often used pillows during his hospital stay for a comfort.

“We don’t like to miss things like this,” she said as she worked with her daughter to tie the pillows.

She also enjoys the time to be around other parents of children with Down syndrome.

“We can all relate and our kids can connect with each other,” she said.

The Weber/Morgan group usually meets once a quarter and she always tries to come. Her daughter is grown and she has noticed it provides support if she shares some of her experiences with the parents of younger children with Down syndrome.

The group had an assembly line going, tying each pillow, then attaching a small card with a picture of one of the members and the saying, “From our hearts to yours.”

Noelle Shaw works for the McKay-Dee Hospital Foundation and helps deliver the pillows to the hospital.

“We love getting things. This is an amazing and fun fundraiser,” she said.

Friday, February 17, 2012

Down syndrome stem cells used to model Alzheimer’s

The scientists used skin cells donated from healthy volunteers and those with Down’s syndrome and turned them into stem cells. These stem cells were then used to generate networks of functioning nerve cells in the lab, which resemble the complex wiring of cells in the human cerebral cortex. The cortex, which makes up over three quarters of the brain, houses many of the nerve cells involved in memory and thinking and suffers particular damage during Alzheimer’s.

People with Down’s syndrome have an extra copy of chromosome 21, a segment of DNA that carries a gene responsible for producing the Alzheimer’s protein amyloid. Due to this extra version of the gene, people with Down’s syndrome have a much higher incidence of Alzheimer’s than the rest of the population. By generating nerve cells from skin cells of people with Down’s syndrome, the scientists could observe the disease process over a period of weeks and compare this to those cells derived from healthy volunteers.

Dr Rick Livesey, who led the study at the Wellcome Trust and Cancer Research UK Gurdon Institute at the University of Cambridge, said: “One of the biggest challenges facing dementia researchers at the moment is a lack of good ways to track the disease over time. By using stem cells donated from people with Down’s syndrome – who are much more likely to develop Alzheimer’s – we have been able to track how the disease develops over a shorter time period than has been possible in the past.”

Within 28 days, the nerve cells made from people with Down’s syndrome showed more than double the amount of the Alzheimer’s protein amyloid than those from healthy volunteers and this built up into amyloid plaques within two months. The scientists also observed that a protein called tau became abnormally altered and distributed in the cells- one of the common later-stage characteristics of the disease.

Dr Livesey added: “What is promising about this stem cell technique is that we can create functioning human cortex cells in a dish, allowing us to more closely model what is happening in our brains. Not only this, but our new model shows many of the characteristic features of human Alzheimer’s disease and will allow us to test new treatments more easily.”

Dr Simon Ridley, Head of Research at Alzheimer’s Research UK, the UK’s leading dementia research charity, welcomed the findings. He said: “We are pleased to have contributed funding towards this study and we hope it can be used to unravel some of the remaining questions about how Alzheimer’s progresses.

Modelling a complex disease like Alzheimer’s is a big challenge, but innovative approaches like this can improve our understanding. As the stem cells in this study were donated by people with Down’s syndrome, they differ genetically to the rest of the population, but could still offer valuable insight into the disease processes in Alzheimer’s.

“Increasing our understanding of dementia is essential not only for people with Down’s syndrome, but for the 820,000 people across the UK living with the condition. It is essential that we improve the models that we have for understanding dementia, but this can only be done through research. As dementia research is so desperately underfunded, we must invest now if we are to find the answers that are so urgently needed.”

from the University of Cambridge

new tool to support students with genetic conditions


Students across the country with genetic conditions like Down syndrome or sickle cell anemia will now be better supported in their educational, medical and physical development, thanks to a new website developed in part by the University of New Hampshire's Institute on Disability.

The website, Genetics Education Materials for School Success (GEMSS,, provides educators, other school personnel, and parents with a "one-stop shop" of useful tools and tips for support of students with genetic conditions throughout the school day. It was developed by the New England Genetics Collaborative (NEGC), a partnership of the Institute on Disability (IOD), the Institute for Health Policy and Practice, Dartmouth Hitchcock Medical Center and the University of Massachusetts Medical School.

Approximately one in every 20 children nationwide has a genetic or metabolic condition like Down syndrome, fragile X syndrome, sickle cell disease, or phenylketonuria (PKU). They most often are taught in general education classrooms, where teams of classroom teachers, paraprofessionals, service providers, and school nurses are charged with meeting their educational and health-related needs. Frequently, however, these school-based teams are ill-equipped to provide the best education or meet other needs of this population in the most meaningful ways, because of a lack of information on the rare conditions affecting these students.

"It was clear that a user-friendly resource on genetic conditions was much needed for those who work in education settings," said Monica McClain, NEGC project manager. "We were fortunate to be able to take advantage of expertise from our broad network to create a tool that will help support student success."

GEMSS provides practical guidance for educational teams in an easily-accessible online format. Each condition and its symptoms is introduced through a brief description in plain language. From there, site visitors can review strategies for addressing dietary and/or medical needs; special education supports; behavior and sensory supports; physical activity, athletics, school field trips, and other events; school absences and fatigue; and emergency planning.

"The GEMSS site is a wealth of information and a valuable asset to teachers and parents in helping them to develop comprehensive educational programs for children who have genetic disorders," said Laurie Lambert, a former New Hampshire general classroom teacher and special educator and inclusion facilitator. "This new tool fills the void of information that was previously available to schools."

New GEMSS content will be added over time and will depend upon readers' input through an online survey.

GEMSS was developed by the New England Genetics Collaborative, which is funded by Cooperative Agreement No. U22MC10980 with the Health Resources and Services Administration/Maternal and Child Health Bureau/Genetic Services Branch. For more information on GEMSS, visit

Monday, February 13, 2012

Delaware cheerleaders embrace special teammate

from by Brian Taff:

When the boys' basketball team at Newark High School takes the court, there is an equally impressive show on the sideline. That is where Rachel Rhea and her teammates are churning out cheers. And this is definitely a team with spirit. Because as good as they are in cheerleading, they may be even better at leading by example.

Rachel has Down syndrome, a fact that in many places might have meant she wouldn't have gotten a chance to be on the high school cheerleading squad. But THIS high school team saw that this girl has skills. "We watched her do one of her cheers," said cheerleader Kristin Hilliard. "We saw how fast she does cheers and how she picks them up and then we brought her to the coach." And the coach brought her on the team, and, as it turned out, into something like a family. "The whole school has embraced her as part of our team," coach Jacqui Fournier told Action News. "She's just one of the girls with the rest of 'em."

For Rachel's family, that's the best part. For a little girl who is used to standing out, blending in is a joy too big to fully understand. "For her to cheer on the team, it means a lot to us," said Rachel's mother, Pam. "It's a nice experience, part of the high school experience." And it appears that joy may be contagious, because when Rachel is on the sidelines, very often there's just one team in the stands.

"The crowd does notice Rachel," said Fournier. "And I don't know who the people are in the crowd. But you do hear, when Rachel's on the floor, you hear from above or the other side of the gym, 'Go, Rachel!'" Which means, these cheerleaders may stand on the sidelines, but they've already won the game.

Sunday, February 12, 2012

The 2012 CDSS Conference Keynote and Endnote Speakers Announcement

The Canadian Down Syndrome Society is pleased to announce the Keynote and Endnote speakers who will be part of the CDSS 25th Anniversary National Conference in Toronto, May 18-20, 2012.
  • Marlee Matlin, Academy Award winning actress, author, mother, and advocate, will join us as our Keynote speaker. 
  • Dr. Dave Williams, astronaut, doctor, and father of a child with Down syndrome, will join us as our Endnote speaker.
We are honoured to have these two inspiring advocates join us for our celebration!
For more information about these speakers, please visit our Speakers page.
More news about the conference will be released soon.

Saturday, February 11, 2012

Obama To Disability Advocates: ‘I’ve Got Your Back’

Some 150 disability advocates from across the country headed to the White House Friday for a day-long powwow with administration officials and they got a surprise visit — from the president himself.
The group of advocates included individuals with disabilities, their families and professionals affiliated with The Arc who were invited to meet with Obama administration officials.
The event was part of the White House Community Leaders Briefing Series, a weekly initiative designed to establish direct dialogue between local leaders and top federal officials.
President Barack Obama surprised the group by stepping in for a short, late-morning talk in the South Court Auditorium.
“I want you all to know that I’m going to keep fighting everyday for an America which lives up to our most basic values, not just for some, but for us all. But I need your help,” Obama told the group.
The president praised the advocates for speaking up last summer during a series of tough budget talks about the importance of Medicaid and said that continued advocacy of that kind is needed.
“People with disabilities deserve the chance to build a life for themselves in the communities where they choose to live,” Obama said, adding that he supports high education standards and employment opportunities for those with disabilities.
“I’ve got your back and I’m looking forward to working with you for many years to come,” he said.
In addition to Obama, the group also heard from top officials at the Justice Department and the Medicaid program, among others.

Friday, February 10, 2012

Dan Marino Starting College For Developmentally Disabled

Miami Dolphins Hall of Fame quarterback Dan Marino, and the Dan Marino Foundation, are planning a downtown Fort Lauderdale college for developmentally disabled students, according to a Sun Sentinel report. The college is looking to give student the real-world experiences necessary to prepare young adults with disabilities to make it on their own.

Marino's son, Michael, was diagnosed with autism in 1992 when he was two-years-old. Marino then founded the Dan Marino Foundation, focused on raising money for the developmentally challenged. Now, the foundation is looking to build the Dan Marino Foundation Vocational College, a first of its kind; post grade school institution for those with developmental challenges.

"We're here to teach the skills, provide the supports and reduce the supports as the program goes along," said Kerri Parmelee, the foundation's transition program director.

"We wanted to create something, much like a two-year community college, but it's totally focused on vocational," said Mary Partin, the foundation's chief executive officer.

The college would be located on the 400 block of North Andrews Avenue, and would utilize nearby apartments for students. The enrollment would cater to students from age 18 to 28, all of whom are diagnosed with autism, Asperger's syndrome, Down syndrome, or other developmental disabilities. The school is aiming to open in the fall of 2013, with a student body of around 60 for the first semester. The school anticipates an annual tuition of around $7500 for the two-year program, and would be divided into trimesters.

Currently, federal and state public services for persons with developmental challenges are only available until age 22 - the Dan Marino Foundation Vocational School would assist would be open to students who were too old to receive further services from the state or federal governments, whether they graduated high school or not. The foundation plans on continuing the social and job skill development of these students.

The State of Florida has begun working on legislation to add the school to the State's higher education system, with the State Senate's high education committee already passing the bill. In the mean time, the foundation is prepared to run as a private institution if they cannot get the designation.