More than two decades after Chris Burke, playing Corky Thatcher, first won the hearts of TV audiences in the Life Goes On series, another American with Down syndrome will soon grace the silver screen. Albuquerque's KOAT-TV reports that filming will soon begin for Everybody Loves Tim, a "docu-series" centered on Tim Harris who, since 2010, has welcomed customers to his popular breakfast-and-lunch joint in the "Duke City," called Tim's Place.
The casting call is unique. Producers are looking for "people seeking to live a more confident and inspired life," and are interested in "learning how to live more like [Tim] does, with supreme confidence and the ability to live life to the fullest."
The energetic, inspiring young restaurateur, and self-styled "hugging machine," has Down syndrome.
The outlook for Tim and other Americans living with Down syndrome - as well as their families - has steadily been improving. Since their commonalities were first identified in the mid-19th century by Dr. John Langdon Down (1828-1896), we have come a long way in understanding and helping people with Down syndrome.
Gone is the erroneous belief that the condition was somehow a parent's fault. Also gone, or nearly so, are hurtful and inaccurate descriptive terms. The advent of antibiotics, starting in the 1950s, has extended the life span of those with Down syndrome to around 60 years by eliminating the respiratory infections that usually ended their lives in childhood.
by Cathy McMorris Rodgers from Forbes:
Seven years ago, just hours after giving birth to our son Cole, I learned how a single diagnosis can change your whole life. How two simple words – Down syndrome – are associated with lifelong complications and heart defects and Leukemia and even early Alzheimer’s. But in that moment, when Cole was taken away for surgery and we reeled from the lifetime of uncertainty that suddenly lay before us, I learned firsthand how scientific advancement saves lives.
While breakthroughs in medicine and technology have given hope to Cole and so many millions like him – whether they have Down syndrome or Autism or cancer – we still have a long way to go to remain the world leader in innovation. In fact, of the 7,000 known diseases, we only have treatments for 500 of them. It is one of the greatest and noblest causes of our time: to commit ourselves, as a country and a Congress, to saving lives.
That is why, as part of the House Energy and Commerce Committee, we have launched the 21st Century Cures initiative, whose mission is to expedite the discovery, development, and delivery of new and innovative treatments to patients everywhere. We need to leverage technological advances to rethink how we conduct research and break down outdated administrative and procedural hurdles. We are committed to reducing the time and complexity of clinical trials so Americans have the best, most effective treatments right here at home.
by Michelle Diament from Disability Scoop:
With significant public backing and support in Congress, advocates say federal lawmakers are poised to consider a major change to the money-saving abilities of those with disabilities.
Just one hurdle remains before Congress is expected to take up the Achieving a Better Life Experience, or ABLE, Act.
The bill — which has lingered since at least 2009 — would establish special accounts to allow people with disabilities to save up to $100,000 without risking their eligibility for benefits like Social Security. What’s more, under the plan, individuals could retain Medicaid no matter how much is deposited.
But before Congress can move forward, lawmakers are waiting for the Congressional Budget Office to weigh in with an estimate of what the bill would cost the government if it’s implemented. Once that figure is released — which could happen any day now — Congress is expected to act swiftly with advocates hoping for a floor vote in early spring.
“The ABLE Act is a must-pass piece of legislation for this Congress,” said U.S. Rep. Cathy McMorris Rodgers, R-Wash., who is a member of the House leadership and a co-sponsor of the bill, in a statement to Disability Scoop.
Modeled after the popular 529 college savings plans, the ABLE Act would allow individuals with disabilities to open a special account at any financial institution to pay for education, health care, transportation, housing and other expenses. Interest earned on savings within the accounts would be tax-free.
by Patrick Gavin from Politico:
Supermodel Beverly Johnson is in town this week to raise awareness of Down syndrome in her role as an international spokeswoman for the Global Down Syndrome Foundation, and she wants one thing in particular out of Washington: more money.
“It’s one of the least funded disorders,” Johnson told POLITICO. “There’s just a lot of research that needs to be done, and we need dollars to do it.”
Johnson did her part to raise money for the cause at The Ritz-Carlton in Washington on Wednesday, where she appeared at the Global Down Syndrome Foundation Gala & Fashion Show, featuring Sheryl Crow and Quincy Jones. Reps. Cathy McMorris Rodgers and Chris Van Hollen also were honored with the Quincy Jones Exceptional Advocacy Award for their support of individuals with Down syndrome. In promotional material for the event, the foundation stated “that Down syndrome is the most frequent chromosomal condition affecting an estimated 400,000 Americans, but is the least funded genetic condition by the National Institutes of Health [NIH], securing only 0.0007 percent of NIH’s 2012 $31 billion budget.”
Johnson, however, is optimistic that Washington can take action on improving the situation.
“We just really want to shine that spotlight and get people to write those checks and to also make Congress aware of the funding that we need for this very serious issue,” Johnson said. “I am very optimistic. I believe in people, and I believe in Congress. … I know that this is something that should be very high on the list and it’s just something that we haven’t made the effort and now we’re making the effort.”
Johnson rose to fame in the 1970s when she became the first African-American woman to grace the cover of Vogue. Given her expertise, we had her weigh in on Washington’s reputation as being “Hollywood for ugly people.”
Johnson treated the District kindly.
“I love D.C.,” she said. “You’re gorgeous.”
May 8, 2013 – Save the Date for the Global Down Syndrome Foundation’s Be Beautiful Be Yourself Gala in Washington, DC!
Join us May 8 to celebrate our models with Down syndrome, 2013 Ambassador Cole McMorris Rodgers, and Quincy Jones Exceptional Advocacy Award recipient U.S. Rep. Cathy McMorris Rodgers. More details about the event and registration information are coming soon! For more information, contact Jessica Karlsruher at 703-683-7500 or jkarlsruher@epiphanyproductions.com.
Auditions for the models will be Friday, March 15, at the George Washington University in Washington, DC. Registration for the auditions is open now!
Greetings! My name is John Anton. I am a self-advocate from Haverhill, Massachusetts. I am currently working on Capitol Hill for Congresswoman Cathy McMorris Rodgers (R-Washington).
As fellow self-advocates, I am glad you will be participating in the 2013 Buddy Walk® on Washington on March 13-14th because our voice counts! Members of Congress and their staff need to hear from us on the legislative issues that really matter to people with Down syndrome.
The Buddy Walk® on Washington webpagewill tell you everything you need to know about the upcoming event but I want to share with you a few exciting things specifically for self-advocates that will happen at the Buddy Walk® on Washington this year:
NDSS Self-Advocates Speak Out
All self-advocate participants are invited to join the NDSS Self-Advocate Advisory Board (SAAB) for an exclusive event just for self-advocates, NDSS Self-Advocates Speak Out. This event will take place from 2:00 – 3:00 pm on March 13th (before our advocacy training).The Board will share their expertise as seasoned self-advocates in this presentation for self-advocates by self-advocates. For more information and to RSVP, please contact NDSS Manager of Education & Programs Vanessa Quick at vquick@ndss.org.
Self-Advocate Bios
Each self-advocate should make a brief one-page bio (see template) to be left at all your congressional visits, so bring at least 5 copies with you. This is a great way to leave an impression - even on people you don’t meet in person! Bios should include a photo, contact information, a few sentences about yourself (where you work, go to school, interests), why you have come to the Buddy Walk® on Washington, how the ABLE Act will impact you and your family, and an ask to cosponsor.
Pre-Training for Buddy Walk® on Washington
NDSS facilitates several advocacy training webinars to help prepare you for your advocacy experience, what to expect on Capitol Hill, and discuss the 2013 key legislative priorities. You can find the slides from the first webinar, Buddy Walk® on Washington 101 – Everything You Need to Know. The next webinar, Buddy Walk® on Washington 201 – Ins & Outs of the NDSS 2013 Legislative Agenda/Asks, will be held on February 26 at 3:00 PM ET. You can register for the webinar here.
You can always contact NDSS VP of Advocacy and Affiliate Relations, Sara Weir at sweir@ndss.orgwith any questions.
Rep. Cathy McMorris Rodgers' life is like a well-conducted orchestra: Everything happens on cue in precisely the right note.
That's on most days. But other days she readily admits things don't always happen so smoothly.
"There aren't enough hours in the day. You always want more time," McMorris Rodgers says. "That's the continual challenge."
McMorris Rodgers is one of 76 women in the House of Representatives. She's the only woman in the House Republican leadership and has been mentioned as a possible running mate for Mitt Romney.
Elected in 2004 to represent the 5th Congressional District in eastern Washington state, McMorris Rodgers has climbed the ranks in Congress, serving on the House Energy and Commerce Committee and as vice chair of the House Republican Conference.
But like many, her work is only part of what defines her. Central in her life are her husband, Brian Rodgers, and their two children, 18-month-old Grace and Cole, 5.
McMorris Rodgers holds the distinction of being the only member of Congress to give birth twice while in office.
Cole Rodgers is the 5-year-old son of U.S. Rep. Cathy McMorris Rodgers and her husband, Brian Rodgers.
One Friday morning, she invited CNN into her home as the family was getting ready for the day. Like many working moms, she juggles the responsibility of a demanding career and duties of home life.
Her husband scrambles eggs on the family's kitchen island countertop, while the congresswoman sits down next to her daughter.
"Do you want some help? You want some help today," she asks Grace, taking the spoon. "There you go. Is that good? How about a little egg?" she asks.
On the other side of the kitchen table sits Cole. In front of him is a piece of paper with alphabet letters. He carefully reproduces the letters as his mom helps him sound them out.
"He's doing well. He's learned his letters. He knows the sounds to the letters and he knows all the uppercase. We're working on the lowercase, and he's starting to read, which is really exciting," she says.
Early years
Voters in Washington state have been able to follow the personal life of Cathy McMorris. She worked on her family's orchard near Kettle Falls, Washington. She's the first in her family to graduate from college, working her way through Pensacola Christian College in Florida.
In 1994, at age 25, she was elected to the Washington Statehouse. A decade later, she arrived in the nation's capital to serve in the U.S. House.
"I was first elected to Congress in 2004 and I was still single. I wondered maybe I would be single for the rest of my life," McMorris Rodgers said. "And then I met Brian. We got married a year later, and soon after that I was pregnant. Cole was born in 2007, and Grace was born in 2010."
Husband Brian is a retired Navy commander, serving 26 years in the service. His father was mayor of Spokane in the early 1970s.
Family challenges
When the couple found out they were expecting, they were both thrilled to be first-time parents.
"It was exciting to know I was going to become a mom. There's so much involved in becoming a mom, and it's such a special time, " McMorris Rodgers said.
Her pregnancy was uneventful until her eighth month when doctors said an ultrasound had revealed a blockage in her baby's small intestine. "They told us, Brian and me, you should know that one out of three babies with this condition is born with Down syndrome."
They didn't have much time to process the news. The next day McMorris Rodgers went into premature labor.
"It was certainly on the forefront of our minds all during labor. It was OK, does my little baby have Down syndrome? "
Cole was born at five pounds, nine ounces. It wasn't immediately apparent if he was born with Trisomy 21, the extra chromosome associated with Down syndrome. Three days later the family received confirmation.
"Boy, that's tough news to receive. It's not what you dream. It's not what you expect. Yes, you're very excited to be a mom, and yet you're faced with a lot of the unknown. I think it's the fear of the unknown that is overwhelming at that point in your life," McMorris Rodgers said.
Personal cause
Since receiving the news, she has received a lot of support from her constituents and people in the disability community.
"I believe my eyes have been open. I just view life from a totally different perspective. I was welcomed by the disability community, and they see the best in what every person has to offer."
It would modify the Internal Revenue Service code to allow parents of children with disabilities to set aside money in tax-free accounts for future education, housing and transportation needs. The accounts would be modeled after current 401(k) retirement and 529 college plans.
"We have hopes and dreams for Cole, and we want him to be all that he can be, and we want to give him the strong foundation so that he can pursue a job and hopefully independent life," McMorris Rodgers said.
Brian Rodgers added, "Like any parent, you want them to reach their highest potential." Life as mom
"Cole, do you like music? Can you put music on," McMorris Rodgers asks.
Cole reaches for a CD. "Oh, oh," she says, glancing at her husband.
"He has Bruce Srpingsteen. He loves Springsteen. It's just a little loud for the morning."
Cole starts rocking out on the couch, his blond hair shaking to the music, while his sister bounces nearby.
The family made the decision to enroll Cole in a public charter school in Washington.
On normal days the kids wake up early around 6:30 a.m.
"They're a nice alarm clock. They kind of take turns getting up," she says smiling at her two children.
She and Brian both pitch in helping get the children dressed and ready for the day. Brian leaves to take Cole to school, which starts at 8:45 a.m., and the congresswoman has some one-on-one time with her daughter.
When Brian returns, she heads off to her Capitol Hill office. He stays home with the kids.
"I spent 26 years in the Navy. So this is a lot like the Navy," he jokes. "It's dynamic, it's interesting and there's a purpose to it."
The congresswoman shuttles back to her district in Spokane on weekends. Sometimes she takes the kids with her. Her mother lives there and is happy to see the grandchildren.
Finding time to get it all done isn't easy. But the couple try.
"Thursday night is date night. So when I'm in town and don't have votes, we have date night. ... That's our night," McMorris Rodgers said.
Life may get even more topsy-turvy for McMorris Rodgers. Her name comes up repeatedly as a possible vice presidential pick for Romney, the presumptive GOP presidential nominee. The family deals with it by trying to be as flexible as possible.
"The schedule is always changing, fluid. We try to schedule things as much as possible in advance. But there's always things coming up. Fortunately, they've been pretty good travelers. They don't know any differently."
Revving up for another campaign season, McMorris Rodgers says she's ready. "This will be the first campaign season for Grace." And Cole -- expect to see him charming the crowds. "He loves parades. He loves to be in a parade and wave and dance to music. He's a natural."
The only woman in the House Republican leadership team reportedly is open to being Mitt Romney's running mate and would like to see a woman on the ticket.
Rep. Cathy McMorris Rodgers, R-Wash., vice chairwoman of the House GOP Conference, acknowledged her interest in being Romney's No. 2 in an interview with National Review. She was first elected to the House in 2005.
She said she's not "seeking" to be picked -- and even admirers say she's a long shot -- and wants Romney to choose a conservative and, if possible, a woman.
"Republican women bring an important voice to the table," McMorris Rodgers is quoted as saying. "The big issues that face this country right now — the economy, jobs, the debt, and health care — are on the forefront of people's minds, and especially on women's minds." The veepstakes have begun in earnest and have taken on the aura of a reality TV show. As USA TODAY's Susan Page reports today, some of Romney's potential running mates are making big speeches, promoting books and are essentially doing "tryouts" in joint appearances with the presumptive GOP nominee.
Sen. Kelly Ayotte, R-N.H., who is sometimes mentioned as a potential VP choice, was on the campaign trail yesterday with Romney. Her stock went up today on Intrade, where she's now given a 4.4% chance of being the nominee. (Florida Sen. Marco Rubio and Ohio Sen. Rob Portman are tops on Intrade.)
This is a family's recount of the Buddy Walk on Washington from the blog Particularly Perfect.
We walked on Washington. We conquered Capitol Hill. We spread our message to our Congressman and Senators in an attempt to improve the futures of all people with disabilities.
Congressman Sessions spoke about being a fraternity brother of Pi Kappa Alpha...and I have always been a proud sorority sister of Alpha Xi Delta, but Congressman Pete Sessions, of Texas, reminded me just how amazing greek organizations can be. Congressman Sessions has two sons, Bill {president of his chapter of Pi Kappa Alpha} and Alex {who just happens to have Down syndrome}. Holding back tears, the congressman explained how proud he is of his fraternity. This weekend, Alex was initiated as an honorary brother. But his pride reaches beyond that. The congressman has received texts and emails, from men who have never met Alex, stating they couldn't wait to call Alex their brother. That is the true meaning of brotherhood. Ties that reach far beyond friendship. Inclusion. At the end of the day, that's all we really desire. To be included. All of us. Despite our differences.
Representative Cathy McMorris-Rodgers has a son, Cole, that just happens to have Down syndrome. I truly believe that some people have been placed in positions of power to help others. She is one of those people. Her political strength will no doubt help many people with Down syndrome in years to come. I am so grateful for her.
Dr. Brian Skotko - I don't even know where to begin...I am in awe of this man. Dr. Skotko is an amazing doctor but even more amazing brother. His sister, Kristin, just happens to have Down syndrome. Dr. Skotko is a board certified geneticist at the Children's Hospital Boston. He has written books, conducted important studies and quite simply made a huge impact in the lives of people with Down syndrome...and their families. He couldn't be more amazing...
What was our message? Sign the ABLE Act. Today Kayla cannot own more than $2,000. She cannot be worth more than $2,000. Truth. Sad but true. Why? She receives medical benefits from the government. Most people with disabilities have medical benefits provided by the government but are not able to be worth more than $2,000 or they will lose those benefits. Kayla can't get money for birthday presents. We can't save for her college or her future. We cannot leave her our house or a car. Her grandparents cannot leave her anything in their wills. She can't be worth more than $2,000. Well...there is one way to save money for her future...a Special Needs Trust...but this trust has several issues...
1. It doesn't transfer from state to state should you move.
2. It is super complicated.
3. It costs several thousand dollars to set up...so...truth be told, we'd be using every dollar we would have to give to Kayla just to set up the trust.
And why not allow her the same right as everyone else? Why should we not be able to save for her future? She is a person, with a voice...and should have the same rights. This is why we walked. She is the reason we fight for equality. We fight for Kayla and her 350,000 friends living in the United States that also have Down syndrome. We fight for them. All of them.
If Kayla were of working age today...why work? Why attempt to be a contributing member of society if she would be penalized for it? Many people with disabilities are fully capable of working but don't because it doesn't make financial sense because they will lose their medical benefits. The system is broken and must be fixed.
So what is the ABLE Act? If passed, it will be a vehicle of savings that is similar to a 529 education account. It will allow people with disabilities to save for their future without losing their medical benefits. The one difference is it doesn't have to be used for education...because not all people with disabilities are on a post-secondary education track...and that's ok...but they should not be penalized for trying to be independent, contributing members of society. That's my soapbox. I'll step down for a moment...but if you feel inclined, contact your local congressmen and senators and ask them to sign the ABLE Act, for Kayla.
Email your Representative below and urge him/her to attend a briefing of the US Congressional Down Syndrome Caucus on Down Syndrome research which is being held on Tuesday, October 25th at 4:30 pm in room 121 of the US House of Representatives Cannon Office Building. This briefing is being organized by Congresswoman Cathy McMorris Rodgers (R-WA) who is a co-chair of the Down Syndrome Caucus and herself a parent of a child with Down syndrome.
The briefing will assist the Congressional Down Syndrome Caucus in developing policy priorities by providing a comprehensive overview of the state of research in Down syndrome and other rare disorders by demonstrating how the study of rare disorders will inform more common disorders. Presenters will discuss the unique biology of Down syndrome, current research efforts in Down syndrome, including NIH and privately funded efforts, and barriers to Down syndrome research. By improving awareness of Down syndrome research, presenters will be able to show that an improved research infrastructure will provide opportunity for translational and collaborative research that will not only benefit the lives of people with Down syndrome, but the general public as well.
A set of new bills introduced in Congress would establish first-ever centers for studying Down syndrome and boost research of the chromosomal disorder, a move supporters say will correct a funding inequity.
Since 2000, the Children’s Health Act has specifically authorized research for several conditions including autism, epilepsy, asthma and fragile X syndrome, but not Down syndrome.
Now, two bills introduced late last week by U.S. Rep. Cathy McMorris Rodgers, R-Wash., could change that.
The legislation would allocate $6 million annually for the National Institutes of Health to establish six centers of excellence for Down syndrome research.
Moreover, the federal agency would be required to create and update a Down syndrome research plan every five years and the bills call for the establishment of three research databases.
The move is an effort to help level the playing field when it comes to the allocation of research dollars. Historically, advocates say that funding for Down syndrome has lagged behind that of other conditions.
Last year, the National Institutes of Health tagged $28 million to study Down syndrome, $6 million of which came from economic stimulus efforts.
At the same time, more than three times as much money went toward cystic fibrosis research, even though that condition affects just 30,000 Americans compared to some 400,000 with Down syndrome.
For McMorris Rodgers, increasing the federal focus on Down syndrome has special meaning, as her son Cole, 4, has the developmental disorder.
“I’m quite concerned that so many of the researchers in the Down syndrome field have difficulty getting funded,” McMorris Rodgers told The New York Times in an article published just last week. “My fear is that for some, they believe that it’s been taken care of through prenatal diagnosis.”
It’s unclear when the legislation may be considered in Congress. But the bills do have bipartisan support — a key to getting legislation passed in recent times — with co-sponsors Rep. Chris Van Hollen, D-Md., and Rep. Pete Sessions, R-Texas, on board.
Those backing the measures say some senators have expressed interest in presenting similar legislation before that body, though nothing has been introduced yet.
When Sarah Palin’s son Trig was born with Down syndrome, she received an outpouring of support from those affected by the disorder, recently released emails from Palin’s time as Alaska governor show.
In the days following Trig Palin’s birth in April 2008, emails poured in from across the country from parents of those with Down syndrome who offered kind words and encouragement.
At least one came from a fellow politician. U.S. Rep. Cathy McMorris Rodgers, R-Wash, who also has a young son with Down syndrome wrote, “I believe I have only seen a glimpse of the positive impact he will have on my life as well as this world.”
“The hardest part is hearing the news and getting your arms around a new reality,” wrote McMorris Rodgers, who offered to talk with Palin. “However, you quickly develop new hopes and dreams for your son.”
Most of the messages, however, came from everyday parents as far away as Florida, Texas, Ohio and Mississippi who heard about Palin’s new connection to the disability community on the radio or through newspaper articles.
“We are blessed to have a 15-year-old son with Down (syndrome) and I can’t imagine what life would be like without him,” wrote Brenda Kopp of Carol Stream, Ill. “Enjoy a new journey of which many of us are a part.”
In another note, Kelly and Jennifer Sweeter from Oklahoma City, Okla. told Palin about their 11-year-old with Down syndrome.
“Although Trig may have special challenges, he will surely bless your life with love and laughter,” they wrote.
