The mission of the Congressional Down Syndrome Caucus is to educate members of Congress and their staff about Down syndrome. The Caucus will support legislative activities that would improve Down syndrome research, education and treatment and promote public policies that would enhance the quality of life for those with Down syndrome.
Urge relevant authorizing committees to support Down syndrome programs and patient care through letters and testimony.
Hold informational events for Members and staff here in DC to increase awareness of the disorder among Members.
Ensure Down syndrome is adequately addressed in all relevant legislation and regulations.
Continue to build House Congressional Down syndrome Caucus into a sustainable, dynamic political force and informational clearinghouse by increasing membership and activities.
Work with National and Local Down syndrome groups to develop leading edge educational, medical and work related initiatives that support individuals with Down syndrome.
Identify and strike down barriers in the law for person’s with mental disabilities.
Expand opportunities for the Down syndrome population in education, the workplace and society at large.
To raise expectations and improve outcomes in education.
To eliminate barriers to economic opportunity in employment and in programs that promotes savings and investment.
To promote and fund research that accelerates the development of effective treatments and therapies.
Promote the translation of Down syndrome research into effective new treatments through interdisciplinary cooperation among the various NIH institutes, the FDA, the CDC and privately funded scientists and clinicians.
To promote inclusiveness for people with Down syndrome.
To help provide family support services and a community of care model.
Advocate for the rights of those with Down syndrome and make sure those rights are being enforced.
Advocacy Alert!! The Buddy Walk on Washington is next week! Advocates from across the country will be converging on our nation’s capital to advocate for legislation that will impact the lives of people with Down syndrome and their families.
In this episode of Down Syndrome Radio we get wonky and talk advocacy and politics with Sara Weir, Vice President, Advocacy & Affiliate Relations for the NDSS. Listen and learn about the Buddy Walk on Washington, the ABLE Act, Congressional Down Syndrome Caucus and Sara’s dog, Boss.
If you can’t make it in person, be sure to reach out to your congressional delegation and get their support for the ABLE Act! Also, please sign up for NDSS Advocacy Alerts to receive an email to let you know what to do to support important Down syndrome legislative activities.
Download Down Syndrome Radio, Episode #18. Better yet…subscribe, rate us and leave a comment on iTunes!
Sara with self-advocate John Anton, bridesmaid Kasey, her dog Boss and Speaker of the House, John Boehner
WHO -- Models with Down syndrome, including GDSF Ambassador (and Jamie Foxx's sister) DeOndra Dixon, accompanied by four members of Congress and actors Bob Guiney (The Bachelor) and Scott Grimes (ER) -- Celebrity musical act: Scott Grimes and Bob Guiney, who perform with Band from TV, a group of television actors who donate their performance proceeds to charities -- Dr. Huntington Potter, newly appointed Director of Alzheimer Disease Research, Department of Neurology and the Linda Crnic Institute for Down Syndrome, University of Colorado School of Medicine -- Members of Congress including the Honorable: John Barrow, Ann Marie Buerkle, Michael Burgess, John Carney, Bill Cassidy, Geoff Davis, Diana DeGette, Cory Gardner, Cathy McMorris Rodgers, Ed Perlmutter, Jared Polis, Scott Rigell, Pete Sessions, Scott Tipton, and Chris Van Hollen
WHY Down syndrome is the most frequent chromosomal disorder affecting an estimated 400,000 Americans, but is the least funded genetic condition by the National Institutes of Health (NIH), securing a mere 0.0007 percent of NIH's 2011 $31 billion budget. GDSF is focused on raising funds and educating the public and leaders about the discrepancy in research funding for the disorder as well as the abilities and achievements of those with the condition.
HOW Tickets start at $150 for people who have a family member with Down syndrome and $250 for general public admission and can be purchased at http://www.globaldownsyndrome.org/ or by calling 703-683-7500.
CONTACT To cover the event, please contact Shawn Flaherty at 703-544-3609.
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.)
“The federal government provides special tax advantages to help people save for college, retirement, and other life events, but people with disabilities have different challenges and go without an appropriate tool for savings,” said Crenshaw. “I encourage everyone to attend the briefing and learn how they can support tax-free savings accounts for the disabled through the ABLE Act.”
Congressman Ander Crenshaw (R-FL), author the Achieving a Better Life Experience Act (ABLE Act – HR 3423, S 1872) with Senator Robert Casey, Jr. (D-PA).
Congressman Pete Sessions speaking at a press conference in support of the Achieving a Better Life Experience (ABLE) Act. Congressman Sessions is a proud cosponsor of this legislation to encourage and assist individuals and families in saving private funds for the purpose of supporting individuals with disabilities to maintain health, independence and quality of life.
This is the third Congress that the ABLE Act has been introduced and there have been some specific changes that were made to the bill for this Congress. Some of the changes would result in providing more flexibility in the account along with a clear path to bring the accounts to the marketplace. Others have been added to help bring down the costs to the federal budget. Most importantly, all of the changes give the bill a much better chance to passing into law.
The resulting "ABLE" account would now fall under the 529 program. That means that the tax free, fraud protection, account limits, reporting provisions and rollover provisions that apply to 529’s would now apply to the ABLE account.
A provision was added that suspends the beneficiary’s SSI check during any period of time the account has assets over $100,000. It is important to note that although the payment is suspended the individual does not lose their eligibility
to receive the payment, so that when the assets are spent down it can be reinstated.
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.
The mission of the Congressional Down Syndrome Caucus is to educate members of Congress and their staff about Down syndrome. The Caucus will support legislative activities that would improve Down syndrome research, education and treatment and promote public policies that would enhance the quality of life for those with Down syndrome.
Urge relevant authorizing committees to support Down syndrome programs and patient care through letters and testimony.
Hold informational events for Members and staff here in DC to increase awareness of the disorder among Members.
Ensure Down syndrome is adequately addressed in all relevant legislation and regulations.
Continue to build House Congressional Down syndrome Caucus into a sustainable, dynamic political force and informational clearinghouse by increasing membership and activities.
Work with National and Local Down syndrome groups to develop leading edge educational, medical and work related initiatives that support individuals with Down syndrome.
Identify and strike down barriers in the law for person’s with mental disabilities.
Expand opportunities for the Down syndrome population in education, the workplace and society at large.
To raise expectations and improve outcomes in education.
To eliminate barriers to economic opportunity in employment and in programs that promotes savings and investment.
To promote and fund research that accelerates the development of effective treatments and therapies.
Promote the translation of Down syndrome research into effective new treatments through interdisciplinary cooperation among the various NIH institutes, the FDA, the CDC and privately funded scientists and clinicians.
To promote inclusiveness for people with Down syndrome.
To help provide family support services and a community of care model.
Advocate for the rights of those with Down syndrome and make sure those rights are being enforce
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