Culinary inspiration from chefs with Down Syndrome

by Beatrice Credi from West:
ChefDown is the first web channel that broadcasts cooking programmes presented by chefs with Down’s Syndrome preparing tasty dishes from around the world. Launched in Spain as a collaboration between Eroski and Down España, the web channel has an accessible video menu in which people with intellectual disabilities give step-by-step guides to making various recipes. Armed with aprons, scales and all the tools of the culinary trade, the presenters give tips on how to eat healthily and get a balanced diet – all done in a simple and entertaining style. The initiative has a dual objective: on the one hand it aims to encourage independence and to involve young people to take part in a group activity, seeing as they can then present their own recipes, broadcast them and share them with the ChefDown community. On the other hand, it also seeks to improve the eating habits of people with Down’s Syndrome, a demographic with high rates of obesity and celiac disease. ChefDown even allows users to plan their own weekly menu.

Crenshaw calls for support of ABLE Act

by Ripon Advance Reports:
House Financial Services and General Government Appropriations Subcommittee Chairman Rep. Ander Crenshaw (R-Fla.) called on Congress on Wednesday to pass the Achieving a Better Life Experience Act, which would provide people with disabilities access to tax-free savings accounts.
The ABLE Act has 305 cosponsors in the House and 50 cosponsors in the Senate. More than 50 local, state and national groups that advocate for people with disabilities have also supported the measure.
“Support for tax-free savings accounts for individuals with disabilities stands at its highest level ever — testament to the tireless dedication of those who believe that all Americans deserve equality when it comes to financial planning tools,” Crenshaw said. “It’s time to pass this legislation and create a brighter future for those in need.”
The bill is intended to relieve financial stress faced by people with disabilities by allowing tax-free savings accounts to cover certain expenses, including education, housing, medical costs and transportation.
Sen. Richard Burr (R-N.C.) called the ABLE Act a “commonsense piece of legislation.”
“…(The ABLE Act) provides individuals with disabilities and their families with the resources to plan for a sound financial future while continuing to improve the quality of their lives today,” Burr said. “I am pleased to see such overwhelming bipartisan, bicameral support for this important bill and look forward to its consideration in the Senate.”

The ABLE Act: Opportunity for Congress to make a difference

by Sara Hart Weir and Steve Beck from the Hill:

There is a single piece of legislation, the Achieving a Better Life Experience (ABLE) Act (S. 313/H.R. 647), before the U.S. Congress that has earned the bipartisan support of at least 312 representatives and 51 senators.

This bill would ease financial strains faced by individuals with disabilities by making tax-free savings accounts available, through the current 529 program, so individuals with disabilities and their families can save to cover qualified expenses such as postsecondary education, housing, transportation, workforce development, and medical expenses not covered by insurance.

Recently, Sens. Bob Casey (D-Pa.) and Richard Burr (R-N.C.) and Reps. Ander Crenshaw (R-Fla.), Chris Van Hollen (D-Md.), Cathy McMorris Rodgers (R-Wash.), and Pete Sessions (R-Texas), the ABLE Act's bipartisan, bicameral Congressional champions, teamed up to call on their Congressional colleagues to pass the ABLE Act before the end of the year.

By enacting the ABLE Act, we aren't asking Congress to create a new program or give us a hand out, we are asking Congress to give the disability community the chance to provide and save for themselves through savings tools that all other Americans have access to today.

Over 100 stakeholder organizations have endorsed the ABLE Act. The bill also earned the backing of lawmakers ideologically ranging from  Sen. Bernie Sanders (I-Vt.) to Sen. Marco Rubio (R-Fla.) in the Senate and Rep. Thomas Massie (R-Ky.) to Rep. John Lewis (D-Ga.) in the House of Representatives.

Local Down Syndrome group raises $200k for research

by Viki Gonia from The Doings Clarendon Hills:

‘Funding Futures’ Benefitting: Down Syndrome Research and Treatment Foundation Location: Goose Island Brewery, Chicago Date: Oct. 26 Attended: 500+ Raised: $200,000 Websites: www.fundingfutureschicago.com, www.dsrtf.org

When her son was around three, Western Springs resident Vicki Van Alphen and her husband Dave learned about the Down Syndrome Research and Treatment Foundation, and she realized, “This is important. They are funding research to go beyond traditional therapies. There’s so much that could be possible for our kids that could affect them in their lifetime.”
That connection led Van Alphen to meet many other families in Western Springs with children with Down syndrome, and they all felt the need to help raise funds to support the work of DSRTF. Thus was born Funding Futures for People with Down syndrome. “It was the spark to help us find each other,” says Van Alphen.
Funding Futures held their second annual fundraising event on Saturday, Oct. 26 at Goose Island Brewery in Chicago.
According to Van Alphen, 500 tickets were sold prior to the event, and they expected to let even more in at the door. Final count of attendees was well over 500 throughout the evening. Goose Island was packed.
The first year, Funding Futures held their event in the smaller back room of Goose Island, but the event turned out to be so successful and popular, that they used the entire space for their second annual event.
Emcee Steve Cortes, analyst for CNBC, welcomed supporters to the event and introduced Mike Sands, Goose Island founder and chief financial officer, who presented Funding Futures and DSRTF with a check for $5000. Margie Doyle, who heads the Funding Futures committee, was introduced and gave a moving and tearful speech about finding people who cared to continue the search for new therapies and treatments for Down syndrome.

A Family adapts to new challenges of a child with Down Syndrome

by Melissa Constanzer from WJFW NBC 12:

Gleason - We all want perfect, healthy, and happy babies but sometimes things don't go as perfectly as planned. One Gleason woman and her family learned how to accept this.

"The second I looked at the picture, I knew he had Down Syndrome," said Shannon Staskiewicz.

Shannon Staskiewicz couldn't lose that thought when she first saw her new baby boy. "I was depressed, I was angry, I was grieving, you know, I expected to have this perfect little boy. And while he is perfect in his own way, it took a long time to make that connection. When I looked at him, all I saw was Down Syndrome, I didn't see Hunter," says Shannon.

She couldn't prepare for this. So she turned to other mothers online for help.

"I, you know, connected with a number of mom's on face book and they were so helpful. You know, just to say, that's normal, you know, it's normal to be sad, it's normal to be angry, but now you need to accept him for who he is," said Shannon.

But the family couldn't afford for the anger to last long. Hunter needed lots of care and attention.

"About twenty-five to forty percent of all Down Syndrome babies have some form of cardiac malformation," said Dr. Dennis McFadden, Shannon's OB/GYN.