Friday, November 21, 2014

Pope’s call to help the vulnerable turns to the autistic at Vatican conference

by Michelle Boorstein from The Washington Post:
57 countries will update one another on such issues as genetic research, pain management and government policies toward people with autism.
It will also begin with a Mass and a monsignor preaching on suffering and will include presentations on how the church can better include autistic people in the core aspects of Catholic life, such as the sacraments of confession and Holy Communion. It will end with an audience Saturday with Francis, an event advocates hope will significantly move the needle on awareness, particularly in Spanish-speaking countries.
Bob and Suzanne Wright, Catholics and co-founders of the major U.S. advocacy group Autism Speaks, will give a presentation at the conference.
“We speak at colleges and places like that, but they don’t reach large audiences,” said Bob Wright, former chairman of NBC/Universal and grandfather of a teenage boy with autism. “Then we started with the religious aspect, but the problem is there aren’t any leaders who have large numbers. Most religions are split up. We zeroed in on the pope, and this pope in particular, because he has such a gift for reaching out to people, and he wants the church to be more inclusive.”
Organizing any conference on autism — which affects one in every 68 children, according to Autism Speaks — is challenging because of the range of opposing views on such issues as the role of vaccines in autism spectrum disorder. The conference doesn’t appear to touch on vaccines but includes a presentation on other potential environmental impacts.

Thursday, November 20, 2014

Carly Booth still aiming to be world number one

by Jonathan Sutherland from BBC Scotland:
If it came down to self-belief, Carly Booth would already be world number one.
But, after a tough couple of years, the global ranking of Scottish golf's child prodigy is a lowly 441.
Now aged 22, she's ready for a re-launch, determined to climb to the pinnacle of her sport and confound the sceptics.
However, she also has another mission - to help her brother compete at the Special Olympics  next year.
Booth burst on to the Scottish golfing scene in precocious fashion, becoming the youngest ladies' club champion in Britain at the age of 11.
Two years later, she was asked in a newspaper interview where she saw herself in 10 years' time.
Her answer? World number one.

Wednesday, November 19, 2014

let's #passtheABLEact this year!

from the NDSS:

Great news... House and Senate Leadership continue to hear from the disability community that the Achieving a Better Life Experience (ABLE) Act (S. 313/H.R. 647) must pass this year! Keep it up!

We need you to make four easy phone calls, tweets and posts to ensure ABLE gets scheduled for a vote!

Please contact the following Leadership offices (all templates are provided below):

Senate Majority Leader Harry Reid:
Leadership Office:
 (202) 224-2158
Talking Points & Sample Tweets

Minority Leader Mitch McConnell:
Leadership Office: (202) 224-3135
Talking Points & Sample Tweets

Majority Leader Kevin McCarthy:
Leadership Office: (202) 225-4000
Talking Points & Sample Tweets

Speaker John Boehner:
Leadership Office: (202) 225-0600
Talking Points and Sample Tweets

Thank you for all you do and let's #passtheABLEact this year!


Ginny Sessions Siller
Manager, Grassroots and Development Programming
National Down Syndrome Society

Friday, November 14, 2014

Disney’s next movie should have a princess with a disability

by Keston Ott-Dahl from The Washington Post:
As an adult on the rare occasions when I did encounter a person with Down syndrome or other disabilities, I chose to walk away for fear they might want to hug me or drool on me. In short, I was a despicable ableist and according to the International Journal of Humanities and Social Science and a study published by the Global Down syndrome Foundation, I was not alone. Discrimination against people with Down syndrome has been well known for centuries, and American history is full of horrid examples: the “ugly laws” barring disabled people who might be deemed “unsightly” from appearing in public; the story after story after story after story after story after galling story of abuse that still often goes punished.  
It never dawned on me that I was discriminating, and I never realized how awful I was or that I would someday be given a chance to be a better human being, which is a tale better left said in my memoir, “Saving Delaney, Saving Me.”
The Global Down Syndrome Foundation reports that it wasn’t until the 1980s that the vogue for institutionalizing Americans with Down syndrome began to fade and only today are researchers making more concerted efforts to unleash the amazing capabilities of people with Down syndrome.
Those researchers have made monumental strides. Today, with Early Intervention therapies and focused educational programs, it is common to read about people with Down syndrome  living on their own, getting married, and even owning businesses, driving cars, going to college, performing as actors, having careers, and working as activists for the Down syndrome community. Broadly speaking, people with intellectual and mental disabilities are increasingly joining the workforce.

Thursday, November 13, 2014

Boy with Down syndrome completes epic bike ride for charity

by Tyson Shine from Yahoo News:
A 12-year-old boy with Down syndrome has helped raised thousands of dollars for the Special Olympics riding from Tasmania's east coast to Hobart.

Sporting a flat tyre, Lucah Mathiassen and his mother Kristin were part of a team of four who completed the journey with a warm welcome in the capital.

The pair and a support crew took four days to ride the 280 kilometres from St Helens in the north-east.

"[We had] 35-kilometre winds straight in the face along the east coast, that was definitely a challenge," Ms Mathiassen said.

The ride raised more than $5,000 for the Special Olympics which offers an opportunity for people with a disability to try competitive sport.

"Lucah will be involved at some point, when he's a little bit older," Ms Mathiassen said.

"Here is a single mum with her son with Down Syndrome ... wanting to do a ride for her son to be able to compete in Special Olympics, but also raising funds for us as well," Special Olympics Tasmania manager Bernadette Black said.

Wednesday, November 12, 2014

Contact Majority Leader Kevin McCarthy to Bring the ABLE Act for a Vote!

Down Syndrome Advocates:

We need your help TODAY!

Please call and email Majority Leader Kevin McCarthy asking him to bring the Achieving a Better Life Experience (ABLE) Act (H.R. 647/S. 313) to a vote under suspension next week!

Contact Majority Leader Kevin McCarthy for his support! Call-in script and email template provided below.

Majority Leader Kevin McCarthy:
Leadership Office: (202) 255-4000

Email Template

TALKING points

-I'm calling to ask Majority Leader Kevin McCarthy to bring the Achieving a Better Life Experience (ABLE) Act (H.R. 647/S. 313) under suspension next week.

-As Majority Leader, we need his leadership to bring the MOST BIPARTISAN BILL up for a vote - the ABLE Act has 85% of the ENTIRE CONGRESS COSPONSORING IT - with 74 Senators and 381 Representatives cosponsoring.

-The House Ways and Means Committee already unanimously voted the ABLE Act out of committee.

-The Senate Finance Committee held a hearing on the bill and, in September, issued a press release outlining their intention to being the ABLE Act to a vote once Congress returns from recess and after the election.

Monday, November 10, 2014

Incredible dancer with Down syndrome pushes toward greatness

FOX 10 News |
from FOX 10 Phoenix:
MAHTOMEDI, Minn. (KMSP) - Mikayla Holmgren has been dancing since she was a little girl. When she's dancing, she's in her element. Just like any other dancer, she's pushed to be great, and her instructor says there's nothing she can't do. She has Down syndrome, and that's simply not a barrier in front of her path to success. Never nervous, the 19-year-old has her parents to thank for her confidence.

“The more knowledge you have about our children, you realize that what you believed 20 years ago that they weren't teachable was not true,” her mom Sandi Holmgren said.

"She knows a lot more than she can articulate sometimes, so that's part of it and I think that shows up in the physical things; she can just perform,” dad Craig Holmgren said.

Sunday, November 9, 2014

Girl finds best friend at K9 Country Club

from KREM2:
A business called the K9 Country Club in Spokane Valley not only houses and trains dogs, but they also help match them up with kids who have special needs.
It is a program that has made a big impact on one little girl named Ella.
"Ella is eight-years-old," said Ella's mother Kacey Bode. "She has down syndrome. She's a very fun little girl. She's the light of our lives."

Second grader Ella has no shortage of people loving her.
"All you can say is she is Ella!" Bode said. "She has so much personality."
Ella's energy is a great fit for a special pup named Luna.
"We started coming here about two months ago," Bode said. "It's been an amazing fit. Ella and Nick the trainer just hit it off."
"They have a very innocent, special, loving way to connect to the dogs," said K9 Country Club Trainer Nick Lungo. "If I can facilitate that, I feel like I'm using my gift."

Saturday, November 8, 2014

Seeing the light: One mother’s story of raising a child with Down syndrome

by Melinda Carstensen from Fox News:
As a 30-something living in New York City, Gina LeVeque had an exciting career in journalism, a passport with stamps from Italy, and a long-term boyfriend. To an outsider— and even to LeVeque at the time— her life looked picture-perfect.
When LeVeque learned she was pregnant in the fall of 2007, she and her boyfriend celebrated. They talked about getting married and building a family.
But during a doctor’s visit that October, LeVeque— like hundreds of other expectant moms in the United States today— received news that would shake her seemingly idealistic world: Her child, which she had been carrying for about 14 weeks, had Down syndrome.
“You just have this sinking feeling of dread,” LeVeque, now 43, told “I had this thing in my head— I don’t know where it comes from— maybe it’s pride: ‘I’m healthy. I went to an Ivy League school. I ran a marathon.’”
When LeVeque recounts receiving the prenatal diagnosis, and the days that followed, the word “fear” peppers her description.

Friday, November 7, 2014

New Concept in Kids' and Teens' Eyewear: Online Eyewear Retailer

from Digital Journal:
MIAMI, Nov. 6, 2014 /PRNewswire/ -- In response to seeing many children enter their optical shop at Miami Children's Hospital in Miami wearing ill-fitting eyewear, Ivonne Goldstein and her husband, Dr. Roberto Warman, an acclaimed pediatric neuro-ophthalmologist, are creating the next generation of online optical with their recently launched The site is the only online optical shop dedicated exclusively to kids and teens.
Logo -
Goldstein and Dr. Warman created the site when their optical shop of the same name – Optiwow – recently celebrated 15 years in business.  
Owners of Pediatric Ophthalmology Consultants at Miami Children's Hospital for more than 25 years, Goldstein, CEO of, and Dr. Warman created the site to offer kids and teens access to a reasonably-priced, large selection of attractive, well-fit, high quality, age-appropriate children's prescription eyewear. The site offers products including eyeglasses, sunglasses, sports goggles, swim goggles, diving masks, eyewear for kids and teens with Down syndrome, and much more.
Chosen by optical experts,'s online kids' eyewear selection is displayed on the easy-to-navigate website, allowing the customer to choose glasses based on a child's age and gender. The site also provides frame shape guides and a virtual try-on application to test the frame styles on the child's face. Each pair is custom created, custom fit with top-quality lenses, and quality checked by's licensed pediatric optical team. stocks and curates prescription eyewear from top designers of children's glasses such as Disney®, Miraflex®, Nike Vision®, Converse®, Lucky®, Guess® and Ray-Ban®. The site carries only the latest styles and highest quality lenses for children, and avoids scaled-down versions of adult eyewear styles, focusing on the brands that cater their designs to a child's needs. Discontinued styles and copies are never an option on

Thursday, November 6, 2014

4 Reasons Why Congress Should Pass the ABLE Act

by Mona McGee from E.D.Bellis:
Washington, DC is polarized due to the divided government and amidst all of the political grandstanding is a measure that could make a positive impact on many families. Even though there is unlikely to be much legislating until after the November election, this piece of legislation has bi-partisan support and could make its way into the lame-duck session.
The reason this piece of legislation would be helpful is because of the large financial strains on many people who have families with disabled members and this is compounded over-time. The indirect costs can be un-sustainable, and this will allow for more cost-effective budgeting should it be executed as visualized.

On September 19, Senate Finance Committee Chairman Ron Wyden (D-OR), Ranking Member Orrin Hatch (R-UT), Senator Bob Casey (D-PA), and Senator Richard Burr (R-NC) released a joint statement updating the public on the Achieving a Better Life Experience (S.313 and H.R.647) ABLE Act status.
They indicated that the Senate has generated momentum and positive progress on passage of the bill. The four Senators announced that as a result of bi-partisan collaboration, a policy agreement has been reached that will be the foundation for passing this legislation and obtaining Presidential signature in the lame duck Congressional session, which begins November 12, 2014.
Although no plan has been developed yet to pay for the $2.1 billion cost over 10 years, legislators are optimistic that agreement can be reached. The ABLE Act legislation, to allow people with disabilities to open tax-advantaged savings accounts, has been in development for eight years. This passage could provide some relief for the many families who struggle financially to save for and or finance the care for their loved ones.

The ABLE Act would allow people with disabilities and their families to save money in new tax-free “ABLE” accounts for any of the following disability-related expenses:
• Education, from pre-K to college
• Housing, be it for rent or for purchase as long as it’s a primary residence
• Transportation, including moving expenses
• Employment support, like job training
• Health, including insurance premiums and assistive technology like wheelchairs
• Miscellaneous items like financial management and legal fees
The IRS would treat ABLE accounts like existing 529 college savings plans (also known as qualified tuition programs): after-tax contributions would not be tax deductible but earnings would accumulate tax free and qualified withdrawals would also be spared.