NIH launches tool to advance Down syndrome research

from the NIH:

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 Participation in the registry is completely voluntary and can be withdrawn at any time,” said Melissa Parisi, M.D., Ph.D., of the Eunice Kennedy Shriver National Institute of Child Health and Human Development, which funded and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.”

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.

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.

2015 NDSS Gala and Auction

Event Details:National Down Syndrome Society Gala & Auction
Thursday, January 29, 2015
Espace
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.

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.

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.

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 info@forwardrise.org or call Forward RISE at 631-291-9328. Check out her blog at theseed9811.blogspot.com or her website at Forwardrise.org. 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

Heart-warming end to senior night

 

By Kassie Barroquillo from KPC News.com:KENDALLVILLE — Despite losing to Columbia City, 40-29, Wednesday, East Noble ended its senior night with a cheering crowd, a trophy, and an excited team — all thanks to a wrestler who has become the heart of the squad.

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.”

ABLE Accounts and Michigan Special Needs Planning

by Michael Lichterman Esq. from Licherman Law:

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.

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

from Senator Bob Casey:

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.”