Friday, January 30, 2015

Eat. Move. Lose.


Want to lose weight this year? Take some advice from Coos Bay’s Gregory Crew.
Eat less. Exercise more.
And no grilled cheese for breakfast.
Following that simple regimen, Greg lost 60 pounds in five months. And he’s just getting started.
Greg, 37, has Down syndrome. It’s a genetic disorder that causes lifelong intellectual disability and, in some cases, chronic health problems. He’s a cheerful soul who loves board games, Power Rangers movies and karaoke. He’s a former Special Olympian.
But pneumonia put him the hospital for a week last year. He has relied on an oxygen tank since then, and last summer Greg’s doctor delivered a life-changing verdict. At 5-foot-3 and 283 pounds, Greg had to shed some weight if he hoped to be healthy.
Linda Devereux soon became a prominent figure in Greg’s life.

Thursday, January 29, 2015

NIH launches tool to advance Down syndrome research

DS-Connect: The Down Syndrome Registry
The National Institutes of Health has launched a subsite of DS-Connect: The Down Syndrome Registry for researchers, clinicians, and other professionals with a scientific interest in Down syndrome to access de-identified data from the registry. This Web portal will help approved professionals to plan clinical studies, recruit participants for clinical trials, and generate new research ideas using information gathered from the registry participants.
“DS-Connect is a centralized, secure website where people in the Down syndrome community can store their health information related to Down syndrome. Participation in the registry is completely voluntary and can be withdrawn at any time,” said Melissa Parisi, M.D., Ph.D., of the Eunice Kennedy Shriver National Institute of Child Health and Human Development, which funded and developed the registry. “It’s also a valuable resource for professionals in health care and science, who can use the de-identified data from the registry to better understand the health characteristics and needs of people with Down syndrome.”

Wednesday, January 28, 2015

Alex Ovechkin shines on All-Star Weekend for a different reason

by Ryan Womeldorf from Sports Glory:
Good Guy Ovi was back at it again on All-Star weekend.
Heading into the festivities, Alex Ovechkin wanted a car pretty badly and there were two ways to do it:
First, get picked last during the Fantasy Draft on Friday, winning the “Mr. Irrelevant” for the night and being given a brand new Honda for that honor. Heck, Ovi even campaigned for it on his Instagram, with a hand-written note reading “I WANT TO BE LAST. I NEED A CAR.”
It just wasn’t to be, with his name coming off the board second to last.
His second opportunity would come Sunday in the game itself. If he could win the Most Valuable Player award, he would take home the car. His three assists weren’t enough to get the job done, though he was able to help linemate and hometown boy Ryan Johansen win the honors.
“I’m not disappointed,” said Ovechkin. “There’s going to be a couple surprises.”
And the surprise was a good one: Honda is giving Ovechkin a 2015 Accord, which Ovechkin will donate to Ice Dogs, a northern Virginia hockey program for special needs youth players. He’s worked with them before, meeting a 10-year-old girl named Ann Schaab who has Down Syndrome. She memorably asked for a sushi date and wasn’t disappointed.

Tuesday, January 27, 2015

Father-son duo provides best moment of NHL all-star game

from My FOX Philly:

The best moment Sunday's NHL All-Star game may not have taken place on the ice.
Team Foligno coach, Chris Sutter, was seen on the sidelines providing support to the all-star team members. Chris, son of Los Angeles Kings Coach Daryl Sutter, was born with Trisomy 21, a form of Down Syndrome according to Bleacher Report.
The father son duo can be seen conferring with players on the sideline, hoping to bring their team to victory.
Unfortunately for the pair, Team Foligno lost 17-12 to their opponents.

Monday, January 26, 2015

2015 NDSS Gala and Auction

Event Details:National Down Syndrome Society Gala & Auction
Thursday, January 29, 2015
635 W 42nd St
New York, NY 10036
6:30 – 10:30 PM
Festive dress and dancing shoes requested/black tie optional

At the Annual Gala & Auction, NDSS gathers together its friends and supporters to celebrate the NDSS mission, the accomplishments of individuals with Down syndrome and those who contribute to the Down syndrome community. This year, NDSS has selected GLEE, Sesame Street and Senator Robert P. Casey Jr. as the Gala honorees.

Sunday, January 25, 2015

NDSS Names New President

from the NDSS:
Sara Hart Weir, MS, has been named the new President of the National Down Syndrome Society (NDSS), after previously serving as the Vice President of Advocacy & Affiliate Relations for NDSS since 2012. Weir is responsible for overseeing the mission and day-to-day administration of NDSS, which is the largest nonprofit in the United States dedicated to advocating for people with Down syndrome and their families.
“The NDSS Board of Directors has unanimously selected Ms. Weir to be our next President,” says NDSS Chairman Rob Taishoff. “In 2015, as NDSS celebrates its 36th year, we need a leader who has a vision for how NDSS will build upon and advance the years of leadership and advocacy on behalf of all individuals with Down syndrome and our families in the United States. Ms. Weir has a commitment to NDSS’ core values and mission; and a capacity to strategically guide our organization forward.”
Under Weir’s leadership, NDSS was at the forefront of the passage of the landmark and historical Stephen Beck Jr. Achieving a Better Life Experience (ABLE) Act, which establishes tax free savings accounts for people with Down syndrome and other disabilities. This significant law is hailed as the most significant legislation for the disability community since the Americans with Disabilities Act (ADA), over twenty-five years ago. For Weir, the advocacy surrounding the ABLE Act was a civil rights issue, as for the first-time ever, it puts a stake in the ground that individuals with disabilities can save money for the future, work, all while remaining on the necessary benefits that the Down syndrome community relies on.

Saturday, January 24, 2015

Inquest hears mother's emotional account of baby's death at Bristol Children's Hospital

from ITV News:
A mother "begged" doctors in Bristol not to let her baby die after ambulance staff failed to treat her as an emergency, an inquest has heard.
Lacey-Marie Poton was born with a complex heart condition and underwent three operations at Bristol Royal Hospital for Children in 2013.
On July 24, the four-month-old had a stent procedure to improve oxygen flow to her lungs and began vomiting the following day. Lacey-Marie was discharged on July 26 but became "shivering, shaking and pale" on the journey to her home in Fishponds, Bristol, her parents claim.
Her mother, 21 year old Emma Norley, reported Lacey-Marie's condition to the hospital but was told to take her to see a GP as it was "nothing to worry about", Avon Coroner's Court was told.
A receptionist at the GP surgery refused to schedule an appointment as Lacey-Marie appeared too unwell and her parents rushed her to Bristol Royal Hospital for Children.
After an examination, Miss Norley and partner Johnny Poton were informed Lacey-Marie had gastroenteritis and would be discharged.
But just 10 minutes after returning home, Lacey-Marie went into cardiac arrest and Miss Norley had to perform CPR while an ambulance was called.
The inquest heard the ambulance crew did not appreciate Lacey-Marie's "time critical" condition and did not use blue lights on the hospital journey.
Lacey-Marie died in her mother's arms around four hours later. Her inquest is the seventh to take place into the care of child heart patients at the hospital.

Friday, January 23, 2015

Advocate Explains Basics of the ABLE Act

by Shelly DeButts from UCP:
Guest blogger Melissa theSeed is a mother, wife, advocate & blogger with two children with medical needs. She advocates for social and civil justice for people with disabilities through her blog and online communities. She is co-founder of a NY-based nonprofit called “Forward RISE” that is committed to bettering communities and improving disability awareness through education and social experiences.
You can contact her via email at or call Forward RISE at 631-291-9328. Check out her blog at or her website at And, she is on Facebook. Feel free to contact her with any comments or questions.
The Achieving a Better Life Experience Act (ABLE) was finally signed into law by the President on December 19, 2014. It is now up to each State to implement the new law which would allow for tax-free savings accounts to be built for a population that has historically been forced to live in poverty. Up until now, in order to be eligible for SSI and Medicaid, a person could not have more than $2,000 in cash and property ($3,000 for couples) or make more than $700 monthly (!) in order to be eligible for Medicaid or SSI.
This means they can’t save money for things that Medicaid and SSI don’t cover like education, housing, a job coach or transportation. While the rest of society is encouraged to save for emergencies, unforeseen expenses and rainy days, people with disabilities – who have naturally higher expenses and higher medical needs – were forced to scrape pennies and do without due to archaic laws and discriminatory notions held by society in general.
What Is the ABLE Act?
Once enacted by the States, this bi-partisan piece of legislation will give people with disabilities and their families freedoms and security never before experienced. It amends the IRS code of 1986 to allow savings accounts to be set up for individuals with disabilities much like the college tuition accounts known as “529 accounts” that have been around since 1996. The Treasury Department is currently writing all of the regulations. There will then be a period of time where public comments on the proposed rules will be allowed. Before the end of 2015, every State is expected to establish and operate an ABLE program.
  • Allows savings accounts to be set up for individuals with disabilities
  • Recipients do not have to count funds as income
  • Recipients do not have to pay taxes on funds if they are used for disability-related expenses
How does it work?
In a nutshell, once enacted by a State, an ABLE savings account can be opened up by an individual with a disability or by someone else on their behalf. Up to $14,000 may be deposited yearly untaxed, with that amount to be increased as inflation rises. If an account surpasses $100,000, the owner of the account will no longer be eligible for SSI but would not be in danger of losing Medicaid. When a person dies, Medicaid will be reimbursed first from the account before it is dispersed to the person’s estate.
  • Can be opened up by an individual with a disability or by someone else on their behalf
  • Up to $14,000 may be deposited yearly
  • Up to $100,000 can be accrued without affecting SSI

Thursday, January 22, 2015

Heart-warming end to senior night

Senior John Herron pinned fellow senior Jake Weimer in an exhibition match immediately following the end of the Knights’ varsity meet. He has been on the wrestling team for three years. Herron has been the recipient of the team spirit award for the past two years; he is always one of the loudest people cheering for his teammates; and he has Down Syndrome.“He’s got all of the qualities everybody wants. He’s so supportive of us,” said EN coach Keith Hoffar. “It has been a privilege and I think the kids think so too.”
Assistant coach Ryan Pepple, who planned the exhibition match, said, “I wanted to give him the same experience as his teammates.”

Wednesday, January 21, 2015

ABLE Accounts and Michigan Special Needs Planning

In the flurry of new laws passed at the end of 2013, there was a law that provides additional options for individuals with special needs or disabilities.  The law is called the ABLE Act – the “Achieving a Better Life Experience” Act. It had overwhelming support from all political parties, something that is rare these days. As you might expect, I am not able to cover all the details one blog post, especially when much of the “nuts and bolts” of how ABLE accounts will work has yet to be figured out through the regulatory process.  So, I will attempt to summarize the act and some important considerations.
The ABLE Act recognizes that there are additional financial strains faced by individuals with disabilities and their families, including those in the Grand Rapids, Michigan area.  In short, the ABLE Act allows for individuals to utilize a tax-free, state-based private savings account, referred to as an ABLE account, for the care of people with disabilities. This ABLE account can be used to supplement government benefits for “qualified disability expenses” such as medical and dental care, education, employment training, housing, and transportation, while not disqualifying a disabled individual from governmental benefits. As a result of the ABLE Act, eligible individuals and families are now allowed to establish ABLE savings accounts that will not affect their eligibility for Supplemental Security Income, Medicaid and other public benefits.

Tuesday, January 20, 2015

Sen Casey, Rep Crenshaw to Sit Together At State of the Union Address to Highlight Passage of ABLE Act

Now Law, ABLE Act Would Allow Families Who Have a Child with a Disability to Save for Their Long Term Care through 529-Style Accounts / ABLE Has Been Called “…the broadest legislation to help [people with disabilities] in Nearly a Quarter-Century.”

U.S. Senator Bob Casey (D-PA) and Representative Ander Crenshaw (R-FL) announced that they will sit together at tonight’s State of the Union address to highlight the recent passage of their bipartisan Achieving a Better Life Experience (ABLE) Act. The ABLE Act, which became law as part of the end of year tax extenders bill, would allow families who have a child with a disability to save for their long term care through 529-style accounts.

“The passage of the ABLE Act is an example of what Congress can accomplish when Democrats and Republicans come together around commonsense solutions for families,” Senator Casey said. “Representative Crenshaw helped drive the ABLE Act forward in the House and I’m pleased to be able to hear the President’s address with him this evening.”
Representative Crenshaw: “Positive achievements can be made by working together to improve the quality of life for those in need. The ABLE Act proves that. I am privileged to have been in a position to guide this reform from an idea into a law and never doubted we would reach our goal. Fantastic teamwork on the Senate side from Senator Robert Casey (D-PA) and other House and Senate Members on both sides of the political aisle in combination with the determination from hundreds of advocacy groups across the nation made all the difference.”

An Atlanta Special Needs Attorney’s Take on the ABLE Act and New Savings Opportunities for Disabled Individuals

by Steve Worral from Georgia Family Law:
Thanks to a new law passed in Congress last month, disabled individuals will no longer have to choose between saving a small nest-egg for future care expenses or preserving long-term eligibility for low-income benefits such as Medicaid or Supplemental Social Security Insurance (SSI).
Under the Achieving a Better Life Experience (ABLE) Act, individuals with disabilities now have the opportunity to begin saving their own money toward future health-care costs, housing expenses, transportation, education, and other needs without jeopardizing eligibility for critical government benefits.
Eligibility under the ABLE Act is limited to those 26 and under, with a $14,000 cap on yearly contributions. A total of $100,000 tax-free can now be accumulated in a special ABLE account, which is limited to one per person.
Prior to the passing of the ABLE Act, individuals with disabilities were unable to have assets totaling more than $2,000 or earn more than $680 per month without forfeiting eligibility for government programs like Medicaid. This was worrisome for families, considering that Medicaid is often the only healthcare option available for those with significant disabilities.

Monday, January 19, 2015

Investing in You: New low-cost savings fund for special-needs children

by Erin E. Arvedlund from
Middle-class parents of children with disabilities: There's a new low-cost, tax-advantaged way to save money on their behalf.
Low cost is the key idea here. ABLE accounts serve a purpose similar to the special-needs trusts often set up to help disabled or special-needs children without disqualifying them from government benefits.
ABLE accounts don't replace special-needs trusts. They are another option.
In December, President Obama signed the Achieving a Better Life Experience (ABLE) Act of 2014, which creates savings accounts for the disabled. Each state will set them up individually.
ABLE accounts will function much like 529 college-savings plans and even have a similar moniker, "529 A."
Accountants, trust attorneys, and industry experts say the new accounts will make it possible for disabled individuals to have assets without jeopardizing other kinds of financial assistance.
"If a disabled person earned more than $700 per month or had assets in excess of $2,000," says Kathryn Flynn of, "they risked having to forfeit eligibility for government programs."
Until now, families got around the restrictions by spending thousands of dollars in legal fees to set up special-needs trusts, which remain popular.
The ABLE Act, Flynn says, has "created a way for families to adequately save for the future as a supplement to private insurance and public benefits."

Sunday, January 18, 2015

The Able Act vs. The Special Needs Trust: Which financial tool is right for your family?

by M & L Special Needs Planning:
Financial planning for families with special needs is difficult under the best of circumstances. As parents of individuals with disabilities, we know that every one of our decisions has long-lasting ramifications that can have a huge impact on the quality of our children’s lives in the future. We also know that our choices now may mean the difference between our children living successfully, with financial independence, and watching them languish on wait lists, fighting to access benefits, services, living options, etc.
There are tools that families with special needs can utilize to help them financially prepare for the future. In our opinion, however, these tools aren’t nearly enough to help these families fill the gap between savings and expenses. The resource limits enforced by the government benefit programs – the current limit is $2000 – also makes it difficult for individuals to save. (Note: for more information about resource limits and government benefits, please click here.) In the past, the only legal way to save money without jeopardizing eligibility for these benefits was the Special Needs Trust. On December 19th, however, President Obama signed the ABLE Act into law thereby providing individuals with disabilities with one more option to help them save – the ABLE account.
Since the ABLE Act became law, there has been a lot of chatter in the special needs community regarding which savings method – the ABLE account or the SNT – is the best option. It goes without saying that the more financial tools available for individuals with disabilities, the better. As each family has its own set of financial circumstances, however, there are cases where one of these tools may be more beneficial than the other. Please join us today as we examine the ABLE Account and the SNT, and provide you with an analysis of the pros and cons of each.

Saturday, January 17, 2015

ABLE Act 2014

by JD Supra Business Advisor from Thompson McMullan:
On December 19, 2014, the “Achieving a Better Life Experience Act of 2014” (ABLE ACT 2014) was enacted.  The purpose of the Act is to permit families to save private funds to help support some individuals with disabilities to maintain health, independence and quality of life.  To qualify for an ABLE account, an individual would have to have been determined disabled before their 26th birthday.   ABLE accounts could be used to help pay for “qualified disability expenses”, such as medical care, dental care, education, job training, housing and transportation, without any impact on the disabled person’s eligibility for public benefits, such as SSI and Medicaid.  ABLE accounts will be designed to supplement, but not replace benefits provided through private insurance, Medicaid, SSI employment or other sources.

Starting in 2015, amounts in ABLE accounts will not be subject to the $2,000 maximum of assets that qualifying disabled people would otherwise be required to maintain to establish and remain eligible for SSI and Medicaid.  In addition, while ABLE accounts may not exceed $100,000 in value for SSI recipients, there is no similar cap for Medicaid recipients.

Friday, January 16, 2015

Building a more inclusive world

by Rick Hodges from Newton Daily News: While the rest of America was preparing to bid farewell to the least productive Congress in history, people with disabilities and their loved ones celebrated a rare victory when Congress passed the Achieving a Better Life Experience (ABLE) Act.

The ABLE Act, which President Barack Obama signed into law a few days before Christmas, will give people with disabilities and their families access to the tax-deferred savings options, such as 529 college plans, that folks without disabilities already enjoy.
It’s the most important legislation for people with disabilities since the Americans with Disabilities Act. It passed by a wide margin among members of both parties.
Ten years ago, this new law was just an idea a few parents of young kids with disabilities discussed around a kitchen table. How did it get this far, especially when Congress can’t agree on anything else?
In 2005, I was sitting in a financial planning seminar to learn how to save for my daughter Audrey, then age 4, who was born with Down syndrome.
I quickly realized that the standard savings options wouldn’t fit because they were created for people whose lives follow the typical pattern: They go to school, attend college or get job training, work to support themselves, then retire.

Thursday, January 15, 2015

O’Malley & Langan PC Praises the Passage of ABLE Act to Aid Disabled Workers

Commenting on a Lancaster Online article about the signing of the “Achieving a Better Life Experience” (ABLE) Act into law, Scranton, PA attorney Todd O’Malley today praised O’Malley & Langan law clerk Sara Wolff for her role in raising awareness for the bill, which extends financial benefits to disabled workers across the United States.
O’Malley, an experienced workers’ compensation attorney at Scranton law firm O’Malley & Langan PC, based his comments on a December 29 article, “People with disabilities finally ABLE to save.” The article details efforts made by Wolff, a law clerk at the firm for more than 13 years, to petition elected officials for their support in extending the rights of disabled workers.
“At O’Malley & Langan, we have proudly watched our own Sara Wolff spearhead the drive to get the ABLE Act passed,” O’Malley said. “The ABLE Act will allow workers with long-term disabilities, such as Down syndrome or those with autism spectrum disorders, to save money for important costs such as housing and education while qualifying for government services and Medicaid.”
According to the article, Wolff lobbied for the past eight years to raise awareness for the bill, including visiting Washington, D.C., with other advocates and testifying before the Senate Finance Committee. Wolff, who has Down syndrome, won over the support of representatives such as U.S. Senator Bob Casey (D-Scranton), who was one of two senators to introduce the act in the senate.
According to Lancaster Online, the ABLE Act of 2014 passed the House by a vote of 404 to 17 and in the Senate by a vote of 76 to 16, allowing people with disabilities to save up to $100,000 in tax-deferred accounts for eligible expenses such as education, medical expenses, employment training and housing.
O’Malley said that Wolff, a gifted public speaker and board member of the National Down Syndrome Society, played an integral role in the passage of the bill, including the creation of an online petition in support of the ABLE Act on that gathered more than a quarter-million supporters.
“The passage of the ABLE Act undoubtedly paves the way for disabled citizens on SSI to dramatically improve their quality of life. Thanks to Sara’s courageous and tenacious efforts, this dream has become a reality for millions,” O’Malley said. “We are proud to call Sara a member of the O’Malley & Langan family.”
About O’Malley & Langan PC
With offices in Scranton, Hazleton, Pittston and Towanda, O’Malley & Langan PC has a well-earned reputation for being a top-notch workers’ compensation and personal injury law firm in Northeastern Pennsylvania. O’Malley & Langan PC has grown to 31 staff and attorneys since Todd J. O’Malley and Gerard Langan founded the firm in 1990, but we still offer clients the personalized service and attention of a small law firm. Our law firm handles a wide range of cases, including workers’ compensation, construction & workplace accidents, long-term workplace illnesses, Social Security disability, auto accidents, personal injury, oil & gas drilling accidents and other cases. Call (570) 344-2667 and schedule a free case evaluation today.
O’Malley & Langan PC
201 Franklin Avenue
Scranton, PA 18503

Wednesday, January 14, 2015

Wolff to hear State of the Union in person

by Borys Krawczeniuk from The Times-Tribune:
Sara Wolff fought hard to help others like her, so U.S. Sen. Bob Casey offered her a special thanks.
He invited Ms. Wolff to sit in the U.S. House gallery next Tuesday to watch President Barack Obama deliver the State of the Union speech. Ms. Wolff helped Mr. Casey get a bill passed that helps the disabled.
“I was very surprised and excited at the same time,” Ms. Wolff, 31, of Moscow, said Monday. “This is my first time. I’m very excited. A little bit nervous, but very excited.”
The Achieving a Better Life Experience bill, ABLE Act for short, allows people with disabilities to save money in untaxed accounts similar to tax-advantaged accounts used by families who save for college. The act also allows Americans with disabilities to save money for education, housing, transportation and health care without losing eligibility for government programs.

Tuesday, January 13, 2015

A Life of Glee

by Jim Denver from NBC King 5:
BELLEVUE, Wash. - Lauren Potter is living a Glee-ful life.
The 24-year-old actress plays the role of Becky Jackson, a sassy cheerleader with Down Syndrome, on the long-running hit show that takes high school drama and puts it to music.
Potter said, "I wanted to be a cheerleader since high school but, sadly, I didn't make the team."
​​Cheer squad ambitions are one of the only things that the upbeat actress and her edgy character have in common.
"Well, to tell you the truth," Potter said, "Becky's a 'bee-otch.' Lauren is not."
But Becky and Lauren are both breaking new ground.
"Down Syndrome is kind of hard sometimes," said Potter.
As a child, Potter was mistreated at times by other kids. It's an experience she carries with her and uses as a force for good, speaking out with the help of friends like co-star Jane Lynch, who appears with Potter in an anti-bullying public service announcement.
"We have to end bullying once and for all," Potter said. "Enough is enough."
Potter travels the world, sharing that message, and her story of reaching for the stars. She recently made a stop in Bellevue to speak at an event organized by Parent Map. The admiration between the star and her fans is mutual.
Potter said, "They're beautiful, they're unique, they're whatever they are. They can live their dreams whatever those dreams are."

Monday, January 12, 2015

Coach Kevin Ollie donates $50K to build 'Kevin's Kourt at Jonathan's Dream Reimagined'

from West Hartford News:
With Coach Kevin Ollie looking on, 20-year old Jamie Roland, who has Down’s syndrome and six-year old first grader Sofie Turek, whose spirit is not slowed by a neurogenetic disorder, took the shots of their lives. Swish. Swish.

A third swish came from Coach Ollie as he announced at a ceremony at the Mandell Jewish Community Center, held Dec. 26, that his charity the Kevin Ollie Charity Classic is donating $50,000 to build “Kevin’s Kourt at Jonathan’s Dream Reimagined”.

Amy Barzach, co-founder of Jonathan’s Dream, one of America’s first inclusive playgrounds, said that “Kevin’s Kourt at Jonathan’s Dream” will be the first inclusive Bankshot™ basketball court in Connecticut.

“’Kevin’s Kourt at Jonathan’s Dream’ will help children and families, of all ages and abilities, discover the freedom of playing together without limitations,” said Barzach.

“Kevin’s Kourt at Jonathan’s Dream” will have up to nine stations created by Bankshot™, which has pioneered inclusive basketball play structures based on total-mix diversity and universal design.

Sunday, January 11, 2015

One morning a month! Down Syndrome Center at Children's Hospital

Do you have one Tuesday morning a month to spare? Consider volunteering at the Down Syndrome Center at St. Louis Children's Hospital! We are in need of volunteers to give their time on the last Tuesday of every month to help support families who have a child with Down syndrome.
As a Down Syndrome Center volunteer, you will collect and/or update the family's information for the Down Syndrome Association of Greater St. Louis. You will also inform families about the DSAGSL- who we are and the support programs we offer such as family events, educational conferences, local community groups, newsletters, a library, and more. You'll answer any questions they have as best you can- but we don't expect you to know everything!
This opportunity is great for retirees looking to give their time! Having a connection to Down syndrome (relative, friend, former professional, etc.) is preferred but not necessarily required. Volunteers will undergo training through the Children's Hospital and a blood test and TB test.
We would like people to commit a minimum of 6 months to the Down Syndrome Center, but preferably longer if you are able. Due to this commitment, we discourage students from this opportunity.
If you would like more information about this opportunity, please email or call 314-961-2504 ext. 101

Saturday, January 10, 2015

A Riverside Fourth Grader’s Best Friend Comes Courtesy of Canine Companions

Ten-year old Rachel Bryant is a fourth grader at Riverside School. About 18 months ago, Rachel, who has Down Syndrome, showed signs of developmental leaps, all good, but at the same time, she began to be afraid of the dark. This was new for the youngster who’d been sleeping through the night since she was an infant. Her parents were “blindsided.”
Originally from Boston, Rachel’s mother Ginny Bryant is a lawyer with expertise in estate planning. Her father, Stephen Bryant, is an international business executive in the bio-tech industry, who hails from Lowestoft in East Anglia. The couple met shortly after Stephen moved into Ginny’s Boston neighborhood. Engaged within 11 weeks, they married and settled in Princeton in 2001.
With lots of relatives in England, the couple looks forward to an annual summer trip there. When Rachel was young enough to use a stroller, negotiating Heathrow’s busy terminal wasn’t a problem but as she grew the couple began to worry about traveling with their active and fast moving daughter — they’ve had three Amber alerts in the past.
“We worried about how to keep her safe,” said Ginny. “We looked into GPS tracking devices and Rachel worked with a behavior therapist but it was still a concern and then one day a friend said ‘Have you thought of getting a dog?’ We aren’t dog people, but my friend forwarded an article about one family’s success with a service dog for their 12-year-old daughter with cerebral palsy. When I read that this child who had never slept through the night until she received her service dog, that was it. I said sign me up and it has been amazing.”

Friday, January 9, 2015

Allsup Provides Achieving a Better Life Experience (ABLE) Act Infographic

from   The Achieving a Better Life Experience (ABLE) Act, signed into law last month by President Barack Obama, was championed by numerous disability organizations, including the National Down Syndrome Society, the American Association of People with Disabilities (AAPD) and the United Spinal Association. Allsup, a nationwide Social Security Disability Insurance representation company, recognizes the efforts of these and other nonprofit organizations in garnering broad bipartisan support and congratulate them on the enactment of the historic legislation.   To download the infographic "Understanding the Able Act" click here or go to
  "The ABLE Act unlocks the doors of financial freedom for many Americans with disabilities," said Mark Perriello, president and CEO of AAPD. "It allows people with disabilities to start saving for their future." An infographic to help understand the ABLE Act and its potential impact is available for download here. The ABLE Act exempts savings for individuals and families receiving means-tested state and federal programs, such as Medicaid and Supplemental Security Income (SSI). Currently, individuals with $2,000 or more in assets would not be eligible for those programs. The provisions under this act would allow for the creation of what's known as a 529-ABLE Plan, allowing individuals with disabilities incurred prior to age 26 to accrue savings up to $100,000, and still meet asset eligibility.

Thursday, January 8, 2015

EPIX captures memorable day at NHL Winter Classic

by Dan Rosen from
Oftentimes, the personalities and experiences around the game that fans and media don't get to see are the most interesting of all.
That's where EPIX has come in these past four weeks, serving as the window to what is usually an unseen world inside a dressing room before a game, on the ice during a game, at home with the players on off days, in the hotel, on the plane, and everywhere else they go where we don't.
The final episode of "EPIX Presents Road to the NHL Winter Classic" doesn't disappoint in bringing the viewer all of that and more. The questions you might have had once the 2015 Bridgestone NHL Winter Classic was over are answered in the episode.
There was the family skate the day before the game, when Ovechkin introduced Washington coach Barry Trotz to his parents and Trotz told Mikhail and Tatyana Ovechkin that it has been a pleasure to work with their son.
There was Trotz on the ice skating with his son Nolan, who has Down Syndrome and has recently started showing an interest in skating.

Wednesday, January 7, 2015

Multi-talented musician sets Sunday performance

from The Buffalo News:
Sujeet Desai, an accomplished 33-year-old musician who was born with Down syndrome, will be featured in a concert, “Hand in Hand with Yad B’Yad: A Musical Performance by Sujeet,” at 2 p.m. Sunday in the Maxine & Robert Seller Theatre in the Jewish Community Center, 2640 N. Forest Road, Getzville.
Desai, who recently moved to Williamsville, travels worldwide giving concerts and leading self-advocacy workshops. He has performed in 13 countries and 40 states and has received numerous national and international awards. He has been featured in two documentary films.
A graduate of the Berkshire Hills Music Academy in Massachusetts, he plays seven instruments – the B-flat and bass clarinet, saxophone, violin, trumpet, piano and drums.
Also a champion athlete, he won gold and silver medals in swimming in the World Games 1999 Special Olympics and numerous medals in alpine skiing, cross-country running and bowling.
Suggested donation is $18 at the door. Students will be admitted free. A light kosher reception will follow.

Tuesday, January 6, 2015

Va. man remembered for helping people with disabilities save financially with ABLE Act

by Jennifer Davis from FOX5
BURKE, Va. -
The family of a local advocate for individuals with Down syndrome is speaking out about his unexpected death and the amazing difference he made helping young people with disabilities nationwide save money for the future.
Before he passed away last month, Stephen Beck Jr. of Burke, Va., succeeded in getting the first piece of legislation affecting people with disabilities through Congress in 25 years.
Eight years ago, Beck sat down at his living room table with some other parents to brainstorm a plan to help their children, including his own daughter, Natalie -- now 15 years old. They wanted a way to help their children save for the future.
Natalie has Down syndrome and Beck was worried because federal law only allowed for $2,000 to be set aside for her long-term support.
"You cannot have more than $2,000 in name or assets or you lose your benefits," his widow Catherine Beck explains. "So individuals with challenges cannot save for their future. Their families can't invest in them to secure their future."

Monday, January 5, 2015

Union Lawsuit Against Florida School Choice Programs Dismissed, But the Battle Continues

by Brittany Corona from The Daily Signal:
Hundreds of Florida parents are able to celebrate the New Year with access to school choice thanks to a decision last Tuesday to dismiss the union lawsuit against the Sunshine State’s Personal Learning Scholarship Accounts and expansion of the tax credit scholarship program.
For the second time, Leon County Circuit Court Judge Charles Francis found that the Florida Education Association, Florida school boards, the NAACP and the League of Women Voters, among others, lacked standing to challenge the school choice options.
During the last day of the legislative session this past June, the Florida legislature passed an education bill that created the nation’s second education savings account program, known in Florida as Personal Learning Scholarship Accounts, and expanded Florida’s thriving tax credit scholarship program.
Shortly after the legislation was enacted, special interest groups filed an injunction against the scholarship accounts and tax credit scholarship program contending the legislative process in which the bill was passed did not follow procedure because it contained more than one educational program and therefore violated the “single subject” rule— despite the subject being “education.”

Sunday, January 4, 2015

Sarah Palin vs. PETA: 'At least Trig didn't eat the dog'

Washington (CNN)Sarah Palin wants PETA to "chill."
"Dear PETA," the former Alaska governor and GOP vice presidential nominee wrote in a Saturday Facebook post. "Chill. At least Trig didn't eat the dog."
Her post was a reference to a photo she'd posted of her 6-year-old son, Trig, who has Down syndrome, stepping on a family dog to reach the kitchen sink -- and PETA's response after that New Year's Day post.
PETA criticized Palin in a statement on Friday, calling her "bizarrely callous" and pointing to a 2008 press conference when -- after pardoning a turkey as Alaska governor -- Palin talked with reporters as other turkeys were being slaughtered.
"It's odd that anyone -- let alone a mother -- would find it appropriate to post such a thing, with no apparent sympathy for the dog in the photo," the organization said. "Then again, PETA, along with everyone else, is used to the hard-hearted, seeming obliviousness of this bizarrely callous woman, who actually thought it appropriate to be filmed while turkeys were being slaughtered right behind her in full view of the camera."

    Saturday, January 3, 2015

    25-year-old Sarnia man to become one of the first disabled Ontario residents to compete in swim/bike/run event

    Wes Harding and Cody Daye are competing in an Ironman triathlon in Benton Harbor, Mich. in August. With approval from the World Triathlon Corporation and through myTeam Triumph, the Sarnia pair will compete in the 70.3-mile event together. (Submitted photo)

    by Terry Bridge from Sarnia Observer:
    Several years ago, Wes Harding was inspired to run a road race with a partner who had a disability but wasn't sure who would be the proper fit until one fateful day at a local gas station.
    Harding had known Cody Daye since he was around the age of six when he taught him Sunday School at Temple Baptist Church.
    But he hadn't seen Daye for a couple of years and, when looking for his first captain – a person with a disability who partners in an endurance race with an able-bodied 'angel' – he just happened to cross paths with the Daye family while refueling his vehicle.
    “Cody's eyes just lit right up, and I said to my wife, 'That's going to be my first captain,'” Harding recalled.

    Friday, January 2, 2015

    Year-end review: LC unified team wins inaugural state title

    by J.R. Tidwell from The Moulton Advertiser:
    Donna Flannagan, the Special Services Director for the Lawrence County Board of Education, was recently contacted about a unique opportunity being presented to some local students.
    “Special Olympics Alabama approached me and asked me about starting a Special Olympics unified football team,” she said. “They said it was going to be in conjunction with the Alabama High School Athletic Association and the 7A state championship game.
    “This was a great opportunity for our students, so I asked Steve Jones, who helps out a lot with Special Olympics in Lawrence County, if we could pursue this, and would he be interested in coaching, because I don't know a first down from a touchdown.
    “He said he would, so we kind of left it at that. When fall came around we called Special Olympics Alabama and they said they were still going to do it, so we began rounding up our team.”
    The Unified league has a distinct set of rules for both games and team make up.

    Thursday, January 1, 2015

    Grocery bagger's positive spirit lifts community

    by Heather Whitley from USA Today and News 10 ABC:
    Kevin Hawkins has been bagging groceries for the past 20 years. His boss says he has hardly missed a day of work and is always in a good mood. His personality is so infectious, customers often wait in line just so they can have Hawkins as their bagger.
    Hawkins has Down syndrome and credits his dad for teaching him how to be a good employee.
    "[My dad] told me to listen to everybody, I mean everybody. He taught me the right things," he says.
    Hawkins' dad passed away about ten years ago. But ever since that day, he has worked hard to live a life his father would be proud of.