Friday January 3, 2014 – Sunday January 12, 2014

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Model Scotty Lesmes and Baltimore Ravens cheerleader at 2011 Gala

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The Global Down Syndrome Foundation’s 2013 Be Beautiful Be Yourself Gala will be on Wednesday, May 8, 2013, in Washington, DC, and we are looking for people with Down syndrome who want to be models in the fashion show to come to auditions on Friday, March 15, 2013! The Be Beautiful Be Yourself Gala is one of the primary fundraisers for the Global Down Syndrome Foundation, benefiting clinical research, medical care and programs across the United States.

Learn more about the Be Beautiful Be Yourself Gala

No experience is necessary! Auditions are open to individuals 7 and older, and potential models are asked to dress nice — no jeans, T-shirts, flip-flops, etc.

We will be offering pizza (gluten-free and regular), salad, cookies and beverages for auditioning models and their guests.

Because of the large number of people we expect to audition for the limited number of spaces,

auditioning does not guarantee a spot in the fashion show at the May 8 Gala.

If you are selected to be a model, you must be able to make several required time commitments, including a clothes fitting, as well as a rehearsal on the day of the Gala. We will be offering hair touchups and light makeup to those interested before they hit the runway.

For more information, please contact Trish Morris at tmorris@globaldownsyndrome.org or 303-807-7898, or view Q&A’s about the audition process.

Please fill out the registration form below in order to attend the auditions on March 15, 2013. Your registration isn’t complete until you click confirm on the next page. By filling out the registration form, you will be added to our mailing list. Thank you and good luck!

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The Social Security Administration has announced it is dropping the term “mental retardation.”

A Notice of Proposed Rulemaking states the SSA will start using “intellectual disability” in its official listing of impairments instead.

The new language is made possible  by Rosa’s Law, which was  enacted in 2010 to end the use of the term “mental retardation” and substitute it with “intellectual disability” in federal health, education and labor policy statutes. However, the legislation did not cover programs such as Medicare, Medicaid and Social Security.

If you or your local parent organization wishes to submit a comment on the proposed rule, go to the Federal eRulemaking portal. The docket number is SSA-2012-0066. Your comment can be a simple one, such as: “As the parent of a son/daughter with Down syndrome, I congratulate the Social Security Administration for its efforts to substitute the outmoded term ‘mental retardation’ with ‘intellectual disability’ and encourage every effort to promote inclusive and people-first language.”

For more information, read the story on Disability Scoop.

Fifty years ago this month, President John F. Kennedy told the nation in his State of the Union address that a change was needed in the way we treated the differently-abled.

“I believe that the abandonment of the mentally ill and the mentally retarded to the grim mercy of custodial institutions too often inflicts on them and on their families a needless cruelty which this nation should not endure,” Kennedy said.

With that, he began a sweeping movement to close the institutions that had done such a disservice to the most vulnerable of our citizenry. Bills moved through the legislative process creating a new way for “typical” people to interact with the differently-abled, no longer hidden behind institutional walls.

Fifty years later, much has changed. It is now illegal to deny the developmentally disabled education. The health of the Down syndrome community has improved to the extant that life expectancy has gone from 20 to 60 years old and the differently-abled are participating in every phase of life from the schoolroom to the workplace.

Yes, much has changed, but there are still pockets of ignorance and cruelty. Last spring, The New York Times did a multi-story expose on the abuses still being suffered by the differently-abled in New York state. Among the findings, “the number of abuse accusations at large institutions overseen by the State Office for People With Developmental Disabilities outnumbered the beds in those facilities” in 2010.

The Times found “only 5 percent of abuse accusations were forwarded to law enforcement, and employees who physically or sexually abused the disabled were often transferred among group homes instead of being fired.” And while the New York governor’s office has taken steps to fix the injustices and The New York Times should be lauded for its investigative reporting, shame on all of us that this kind of horror is still possible in this country this recently.

A group of diners recently asked to be moved to another restaurant table away from a 5-year old with Down syndrome. But 50 years after Kennedy called for radical change, the server, a young man born well after Kennedy’s State of the Union, spoke up to those customers in defense of the boy and his family’s right to be in the restaurant. That story has bounced all over cyberspace and became a People “Hero” story.

Change is uneven and frustrating, but look around the classroom or community and you will see evidence of President Kennedy’s call to action on behalf of those of us who are defenseless.

The reviews are in, and Global Down Syndrome Foundation International Spokesman John C. McGinley is getting raves for his performance as Dave Moss in “Glengarry Glen Ross,” which had its official opening over the weekend on Broadway.

Congratulations to a wonderful actor and a strong advocate for people with Down syndrome!

Here’s what the critics are saying:

“John C. McGinley is especially dazzling as the hothead who plans the office crime…”

Linda Winer, Newsday

“John C. McGinley steals the show in the first act, as Dave Moss.”

Emma G. Keller, The Guardian

“John C. McGinley steps on the gas pedal … shifting the play into the necessary high gear. As the manipulative intimidating salesman Dave Moss, McGinley spits out Mamet’s curses like angry red flares.”

Elisabeth Vincentelli, New York Post

“John C. McGinley is wonderfully vile as Dave Moss, the resentful salesman who gets apoplectic when he thinks of how far behind he’s fallen in the race for sales …”

Marilyn Stasio, Variety

“John C. McGinley, who plays Dave Moss, the employee who hatches the scheme of stealing the leads on prospective customers that office manager John Williamson controls with an iron fist, has explosive moments that raise the production’s pulse.”

Charles McNulty, Los Angeles Times

“The production packs some heat in the performances of Bobby Cannavale and John C. McGinley …”

David Rooney, The Hollywood Reporter

“McGinley is especially fierce, funny and occasionally frightening as Moss. To paraphrase his archrival Roma: Give him some scenery, he’ll show you how to chew it. Nobody acts with his canines like McGinley; after three minutes, you feel intimately acquainted with the inside of his mouth. (I mean this with admiration!)”

Scott Brown, New York Magazine’s Vulture

“… John C. McGinley, the abrasive senior doctor on ‘Scrubs,’ is wonderfully clueless as Dave Moss …”

Mark Kennedy, The Washington Post

“The good news is that John C. McGinley is aces.”

Lisa Schwarzbaum, Entertainment Weekly

“… with notable exception of John C. McGinley, who fumes and foams with expert ease as the hot-­‐tempered, despicable Dave Moss …”

Brian Scott Lipton, Theater Mania

Champion open-water swimmer Karen Gaffney, who received the Global Down Syndrome Foundation’s Quincy Jones Exceptional Advocacy Award in 2010, has been nominated for the “Woman of the Year” award by the World Open Water Swimming Association.

SHE NEEDS YOUR HELP! Voting for the award is open through Dec. 31, and you can click here to show her your support. The winner will be announced Jan. 1.

The World Open Water Swimming Woman of the Year honors the woman who (1) best embodies the spirit of open water swimming, (2) possesses the sense of adventure, tenacity and perseverance that open water swimmers are known for, and (3) has most positively influenced the world of open water swimming during the year.

In addition to her swimming accomplishments, which include crossing the English Channel as part of a relay team, and swimming the full length of Lake Tahoe, Karen is president of a nonprofit organization dedicated to championing the journey to full inclusion in families, schools, the workplace and the community for people with developmental disabilities. Learn more about the Karen Gaffney Foundation at karengaffneyfoundation.com or on Facebook.

Here is what the World Open Water Swimming Association award nomination says about Karen:

Karen Gaffney is a champion in every sense of the word: a humble heroine, a remarkable role model, a spectacular speaker. The English Channel relay swimmer has dedicated herself and the tools at her disposal to champion a journey to full inclusion in families, schools, communities and the workplace for people with Down syndrome or other developmental disabilities. With dramatic open water swims to emphasize one’s potential, as well as her speeches, video tapes and resource materials, she constantly installs hope for others with Down syndrome. Her lifestyle proves a full productive and inclusive life is in store for parents and families of a child born with Down syndrome or other learning disabilities. For her swims across Lake Champlain, Lake Tahoe, in Hawaii and in San Francisco Bay, for her ability to heighten awareness and raise expectations of students, counselors, educators and those in the medical profession of the capabilities of children with Down syndrome to learn, grow and contribute in an inclusive setting, Karen Gaffney is a worthy nominee for the 2012 WOWSA Open Water Swimming Woman of the Year.”

Please go to the voting page to cast a ballot for Karen, and spread the word to friends and family to support her as well.

Congratulations, Karen, on your nomination!

Eliza Richard

For the first time, two children from the Global Down Syndrome Foundation’s Be Beautiful Be Yourself Dance Class will be on stage for the Colorado Ballet production of the holiday classic “Nutcracker,” to the delight of a huge audience.

The Colorado Ballet’s “Nutcracker” will feature performers with Down syndrome on Tuesday, Dec. 18, and Wednesday, Dec. 19, at the Ellie Caulkins Opera House, 1101 13th Street in Denver.

Eliza Richard, 10, will be part of the Dec. 18 “Nutcracker,” and Schuyler Kropp, 7, will take to the stage on Dec. 19. Both performances are scheduled for 6:30 p.m.

Eliza and Schuyler will be partyers who go out on the stage with other children and adults as they celebrate the season.

Schuyler Kropp

The Colorado Ballet is a partner with the Global Down Syndrome Foundation in the Be Beautiful Be Yourself Dance Class. The classes run for 10 weeks and teach ballet movement, music appreciation, rhythm and basic dance steps to children ages 5-14 who have Down syndrome.

Go support our dancers while taking in a holiday classic. Tickets to the “Nutcracker” are available by clicking here.

Congratulations, Eliza and Schuyler, and we look forward to seeing you shine in the “Nutcracker”!

The Global Down Syndrome Foundation is honored to announce that the 2011 Be Beautiful Be Yourself Fashion Show has been nominated for six ICON Awards!

The annual ICON Awards are presented by Colorado Expression magazine and honor event excellence in Denver.

People’s Choice voting on the awards is going on now through Dec. 15, and we’d love to have your vote to help promote what a great awareness event the Be Beautiful Be Yourself Fashion Show is.

Please visit this website to cast your vote:

http://icon.coloradoexpression.com

(You will have to register when you vote, but it’s a quick process and the website won’t spam you.)

The Be Beautiful Be Yourself Fashion Show is nominated in the following categories:

• Best Overall Event (Over $75,000)
• Best Event Produced for a Non-Profit Organization
• Best Entertainment Concept & Execution
• Best Design
• Best Invitation
• Best Floral Design

Thanks so much for your support. Please forward this information to your friends and family, and please make sure to vote for the Be Beautiful Be Yourself Fashion Show!

Kylee Nevergall, right, walks the runway at the 2008 fashion show.

The Global Down Syndrome Foundation recently encouraged the friends, supporters and colleagues on our mailing list to update their contact information, and we’re pleased to announce that Michelle Nevergall is the winner of a random drawing for an iPad among those who responded.

Michelle and her husband, Troy, are the parents of 19-year-old Kylee and 17-year-old Dylan. Kylee, who graduated in May from Ralston Valley High School in Arvada, Colorado, has Down syndrome. Dylan is in his senior year at Arvada West High School.

Kylee was a model in the Global Down Syndrome Foundation’s inaugural fashion show, and her parents say she still talks about the experience today.

Michelle says Kylee loves to cook and, most of all, eat. She also loves country music, books and movies. Now that her brother can drive, spending time with him is one of her favorite ways to spend an afternoon. She loves being with her cousins and her grandparents.

“As Kylee enters into young adulthood, we can look back on all that she has accomplished and take pride in the person that she has become and watch with awe at the amazing dreams that she has for her life,” Michelle says. “We can’t wait to see where she is several years from now. Anything is possible!”

Michelle says Kylee is working on using her phone to keep track of her calendar and remind her of appointments.

“As technology continues to improve and become a bigger part of our lives, we feel like it is important for Kylee to know her way around a computer,” she says. “This iPad will be a great tool in teaching Kylee and working on her technology skills.”

Michelle is a former member of the board of directors for the Mile High Down Syndrome Association. She and Troy were involved with new-parent visitations through MHDSA and also ran a parent support group out of their home.

Congratulations to Michelle Nevergall and her family!

Today, Dec. 3, marks the International Day of Persons with Disabilities, and this year’s theme is “Removing barriers to create an inclusive and accessible society for all.”

U.N. Secretary-General Ban Ki-Moon announced that the U.N. General Assembly will hold a High-Level meeting on disability and development next year.

“Persons with disabilities have a significant positive impact on society, and their contributions can be even greater if we remove barriers to their participation,” Ban said. “With more than one billion persons with disabilities in our world today, this is more important than ever.”

U.S. President Barack Obama issued a declaration that “even as we partner with countries across the globe in affirming universal human rights, we know our work will not be finished until the inherent dignity and worth of all persons with disabilities is guaranteed. Today, let us renew our commitment to meeting that challenge here in the United States, and let us redouble our efforts to build new paths to participation, empowerment, and progress around the world.”

Events were planned around the world to mark the event. Click here for a listing of some of the awareness-raising activities.

One such event was in Taiwan, where differently-abled children and adults performed over the weekend, showcasing African dance, wheelchair ballroom dancing, and saxophone and jazz drum music.

Chen Yi-ming, who has Down syndrome, performed ballroom dancing with his mother, Hsu Mei-hui.

Hsu told Focus Taiwan news agency that “I hope to show other families with disabled children that these children are capable and not as difficult to teach as imagined. The point is to give them a stage.”

Another story to focus on today involves Glen Niles, a former officer in the Trinidad and Tobago Coast Guard who co-founded the Down Syndrome Family Network, which gives parents and caregivers of people with Down syndrome access to resources, support and answers.

Read an inspiring question-and-answer article with Niles at Guardian Media.

Thanks to everyone who makes awareness of issues facing the differently-abled a priority, not only today, but every day!

For more information about the International Day of Persons with Disabilities, check out this webpage from the U.N.