May 19th, 2015 by Global Down Syndrome Foundation
Global Down Syndrome Foundation supporter and Quincy Jones Exceptional Advocacy Award recipient Jamie Foxx is headed back to the Billboard charts.
The multi-talented R&B star released “Hollywood: A Story of a Dozen Roses” on May 18.
Foxx’s sister DeOndra Dixon, a Global Ambassador and fellow Quincy Jones Award winner, undoubtedly approves of the new album title. Dixon has seen Hollywood up close and personal. She is a star in her own right, having appeared in Foxx’s music video for “Blame It,” and having danced on stage at the Grammys. In addition, Dixon models each year at the Be Beautiful Be Yourself Fashion Show aside such celebrities as Alec Baldwin, and has graced the front cover of Down Syndrome World magazine.
When Foxx announced the release of “Hollywood” last month on “Jimmy Kimmel Live,” he talked about how much his sister enjoys spending time with R&B star Chris Brown. Brown joins Foxx for the already-released single “You Changed Me” on the album.
“Some of the things that people don’t get to see Chris on the inside like when he comes and dances with my sister who has Down syndrome for hours,” Foxx told Kimmel.
Foxx is a five-time Grammy nominee, and won Best R&B Vocal Performance by a Duo or Group for “Blame It.” He is also an Oscar-winning actor.
“Hollywood” is his first album since 2010’s “Best Night of My Life.”
Watch Jamie Foxx talk to Jimmy Kimmel about DeOndra Dixon and the Global Down Syndrome Foundation
Watch Jamie Foxx’s acceptance speech for the 2012 Quincy Jones Exceptional Advocacy Award:
Watch Jamie Foxx sing to Global co-founder Anna Sie at the 2014 Be Beautiful Be Yourself Fashion Show:
May 8th, 2015 by Global Down Syndrome Foundation
“Where Hope Grows” hits theaters May 15. David DeSanctis is the first actor with Down syndrome to land a leading role in a wide-release movie.
“Where Hope Grows,” the first feature film to star an actor with Down syndrome in a leading role, opens in wide release on May 15, and for first-time actor David DeSanctis, it’s the fruition of a long but rewarding experience.
The movie tells the story of a grocery-store clerk who goes by the name Produce, played by DeSanctis. Produce strikes an unlikely friendship with Calvin (Kristoffer Polaha), an alcoholic, burned-out baseball player, and becomes a guiding role for Calvin’s transformation. It’s a movie about relationships and the transformative power of true friendship.
DeSanctis, who is a 22-year-old with Down syndrome from Louisville, Kentucky, found solace in music as he worked extended days on the movie set while making the film.
“I have to learn how to wait on the long hours,” he said. “I worked 12 to 14 hours a day.”
DeSanctis loves music and dancing, and that passion was infectious to the rest of the cast and crew. The music played a big role in bringing DeSanctis, and the rest of the cast, together. For a taste of the camaraderie, be sure to stick around for the end credits after the movie.
Director Chris Dowling said the movie producers created a playlist of songs based on what DeSanctis liked, and they paired the playlist with different scenes in the movie. Then, when days would drag on and filming would run late, the music would break out.
“We might be rushed for time but we’d have a conga line break out in the middle of the grocery store at 11:30 at night,” Dowling said. “David’s a very happy guy, but there are also times where he can get overwhelmed.” The music served as a way for DeSanctis, and the rest of the cast, to refocus.
In preparation for the film’s wide release on May 15, movie screenings have been held across the United States. On May 4, “Where Hope Grows” got a red-carpet premiere in collaboration with Special Olympics in Los Angeles. Global Down Syndrome Foundation sent two self-advocates and their guests to attend and walk the red carpet. In addition, Global supporters were invited to a special screening of “Where Hope Grows” in the Denver area in April that included a Q&A with Dowling.
“Where Hope Grows” was an Official Selection of the 2014 Dallas International Film Festival, and received the Audience Choice Award at the Heartland Film Festival in Indianapolis.
Want to see the movie? Click here to learn more about theaters in your area that will be showing the film.
Learn more about DeSanctis, the movie and what Dowling hopes the impact of the film will be – all in the upcoming issue of Down Syndrome World magazine. Become a member of the Global Down Syndrome Foundation to receive Down Syndrome World.
Global, Crnic Institute Update Congress on Promising Down Syndrome Research and Participate in a Key NIH Meeting Addressing Clinical Trials for People with Down Syndrome
May 6th, 2015 by Global Down Syndrome Foundation
Congresswoman Cathy McMorris Rodgers
Crnic Institute Director of Alzheimer’s Research Dr. Huntington Potter
Dr. Potter with Maria Bonilla, Karina Bonilla, Jose Moreno-Campuzano, Maria Campuzano and Sahid Morano-Campuzano
Congressional Down Syndrome Caucus Briefing
Co-organized by the Global Down Syndrome Foundation, the Congressional Down Syndrome Caucus Briefing was held at the U.S. Capitol on April 22. The briefing, entitled “21st Century Advances in Down Syndrome Research Advocacy,” attracted over 40 people, including Members of Congress, congressional staff, self-advocates, family members and Down syndrome community leaders.
Speakers were represented by Global and the Linda Crnic Institute for Down Syndrome, including world-renowned Alzheimer’s scientist Dr. Huntington Potter. Speakers also came from the National Down Syndrome Society, National Down Syndrome Congress, and LuMind Research Down Syndrome Foundation.
Congresswoman Cathy McMorris Rodgers, Global Down Syndrome Foundation’s Quincy Jones Exceptional Award recipient, kicked off the briefing, highlighting the need to focus on research and medical care for people with Down syndrome now that the ABLE Act is passed. She referenced the 21st Century Cures Act as a possible vehicle for increased funding. The Act is a bipartisan, multi-agency initiative with the goal of accelerating the discovery, development and delivery of promising new treatments for diseases and conditions.
NIH Meeting – “Outcome Measures for Clinical Trials in Individuals with Down Syndrome”
Led by the Eunice Kennedy Shriver National Institute of Child Health and Human Development at the National Institutes of Health, this meeting convened over 40 experts including Down syndrome basic researchers, behavioral specialists, and clinicians, representatives from Roche pharmaceuticals, NIH leaders, Food and Drug Administration leaders, and specialists from other conditions such as Autism and Fragile X.
Global and Crnic representatives were key participants in this meeting.
Participants divided into working groups to identify measures that would be appropriate for testing children and adults with Down syndrome. Dr. Potter participated in both the cognition and medical/physical working groups, and discussed some of the potential biomarkers that could be tested to see if drugs are having an effect. Colorado State University behavioral and cognition specialist Dr. Debbie Fidler was a leading expert on the behavior working group.
The meeting was an important step toward addressing the priorities in the recently released NIH Down Syndrome Research Plan. Meeting participants will continue their hard work on this topic, and the NIH will publish the meeting outcomes in the coming year. Of course, more funding is needed to fulfill the goals of this plan, and Global is working hard in collaboration with other national Down syndrome organizations to increase funding for Down syndrome research.
May 6th, 2015 by Global Down Syndrome Foundation
Aurel is a beautiful boy who happens to have Down syndrome. His parents, Aina Dressler and Robert Conle, share their personal story of hope, love and family.
Aurel and Aina
1. How did you feel when you learned Aurel happened to have Down syndrome?
2. Have your feelings changed since that initial discovery?
3. What has surprised you about Aurel? How has he changed your lives?
4. Aurel has grandparents in Denver, Hikmet Ersek and Nayantara Ghosh-Ersek. What relationship do they have with Aurel, and how has your extended family reacted to the diagnosis of Down syndrome?
5. You recently visited the Sie Center for Down Syndrome at Children`s Hospital Colorado. How was that experience?
6. Why is the work of the Global Down Syndrome Foundation important?
7. Having been to Denver. do you think there are cultural differences between how people react to Aurel in this city versus Vienna (where Aurel was born) versus Munich (where he lives now)?
8. What do you want people to know about Aurel?
9. What are your hopes and dreams for Aurel?
10. Anything else you would like to add?
April 9th, 2015 by Global Down Syndrome Foundation
Louis “Louie” Rotella IV’s unfiltered and unfettered approach to life is a constant source of inspiration to his family
This article is an excerpt from Down Syndrome World magazine, a publication of the Global Down Syndrome Foundation. To receive Down Syndrome World, become a member of the Global Down Syndrome Foundation today at www.DownSyndromeWorld.org
Fourteen-year-old Louie IV was born into baking royalty — his family has owned and operated Rotella’s Italian Bakery Inc. in Omaha, Nebraska, since 1921. When Louie was born with Down syndrome, his great-grandfather and the family’s patriarch, Louis Rotella Sr., provided the reassurance the boy’s parents needed.
“Right after the doctors told us Louie had DS, Louis Sr. tapped me on the cheek like full-blooded Italians do, looked me in the eyes, and said, ‘Keep your head up. Things are going to be fine,’ ” Louie’s dad, Louis III, said. “That was a huge relief. He let me know we had the whole family’s support from the very beginning.”
‘Life doesn’t need to be so complicated’
Louie’s support network now includes his siblings, 12-year-old Mia and 7-year-old Niko.
“Mia is a most intelligent girl who greatly benefits from Louie’s presence and helps my husband and me manage his Type I diabetes,” said Louie’s mom, Jill. “Niko enjoys being around Louie but has to be patient at times when he tries to play with his brother.”
Life in the Rotella home resembles that of most families in many respects.
“We do lots of typical things as a family, including going to church, family functions, sporting events, and out to eat,” Jill said. “Louie — and all of us — are lucky to have such a strong support system in each other.”
Jill marvels at her oldest son’s uninhibited, unbiased outlook.
“Louie teaches us that life doesn’t need to be so complicated; it can be simple and pure,” she said. “He is one of the only students in his middle school class who blows kisses to his mother at school in the morning.”
Louie loves swimming, music, and dancing and at tends a full-inclusion school. His first method of communication was American Sign Language, and he remains so fond of it that he hopes to help teach it in a daycare one day. In the meantime, he’ll keep delighting, surprising, and inspiring a family that can’t imagine life without him.
A Love Story
Louis Rotella III and Louis “Louie” IV share more than a name and the love of father and son — they’re also forever linked by a creative advocacy project.
In 2010, Louis III published The Little King and His Marshmallow Kingdom, a children’s book he wrote based on his son’s life that teaches young readers about the beauty of differences in others and the value of acceptance.
“Writing the book was a way to honor Louie IV and say, ‘I love you,’” Louis III said. “The book conveys that it’s perfectly fine to be unique and that uniqueness should be celebrated. Louie and I got to do a lot together because of the project, like give presentations and sign autographs. Our bond grew stronger, as did our message to others.”
The Little King and His Marshmallow Kingdom (Ata-Boy Productions Inc., 2010) is available at Amazon
March 20th, 2015 by Global Down Syndrome Foundation
WHAT: The Empire State Building in New York City and the historic Daniels & Fisher Tower in downtown Denver will light up blue and yellow in honor of World Down Syndrome Day.
WHEN: Night of Saturday, March 21, 2015 (World Down Syndrome Day)
WHY: World Down Syndrome Day started on March 21, 2006, in Singapore. The date, 3/21, represents the 3 copies of chromosome 21 that people with Down syndrome have. World Down Syndrome Day has developed into a movement that both celebrates and values people with Down syndrome around the world, which is evidenced by the United Nations recognizing World Down Syndrome Day in 2011. Blue and yellow are the colors of Down syndrome awareness.
Global would like to thank Holly Kylberg and the property management at the Daniels & Fisher Tower for making the tower lighting possible.
March 3rd, 2015 by Global Down Syndrome Foundation
in the pursuit of human rights for people with Down syndrome. Even where there are anti-discrimination laws, they aren’t always followed.
In the recent case of “Baby Leo,” the birth of one child with Down syndrome in Armenia has sparked a worldwide discussion about the rights of the differently-abled, government policies regarding communication with new parents, and the need for improved education and awareness.
Leo was born Jan. 21, 2015, to an Armenian mother and a father from New Zealand. Leo’s father claimed that the baby was abandoned by his mother and he was given an ultimatum of divorce if he wanted to keep the child. She filed for divorce a week later after the father decided to keep Leo. Leo’s mother has disputed that account, and recent news reports state that the couple may be reconciling and planning to move together to New Zealand.
Regardless of the circumstances, Global knows that new parents of a child with Down syndrome can be overwhelmed by the experience and must receive fair, accurate and complete information about what it means to have a child with Down syndrome in the 21st century, when life expectancy has dramatically increased and medical advances are improving the quality of life. Such information is available through the Down Syndrome Prenatal Testing Pamphlet, a joint project of Global and the National Down Syndrome Congress that is available for free as a digital download or as a printed pamphlet upon request.
Unfortunately, it seems that complete and accurate information wasn’t readily available in the case of Baby Leo in Armenia, where societal norms often favor orphanages over a familial setting for those with Down syndrome because of a lack of government assistance to families of the differently-abled.
Leo’s father, Samuel Forrest, created the “Bring Leo Home” fundraising page on website GoFundMe to try to get donations of $60,000 to return with Leo to his native New Zealand, where he believes social services and more widespread acceptance of the differently-abled would provide for a better life. After Leo’s story went viral, Forrest ended up raising over $500,000 from nearly 18,000 donations on the site.
Forrest’s “Bring Leo Home” page describes Armenia as a country renowned for its hospitality, but where “scores of babies are abandoned each year, for reasons ranging from physical or intellectual disabilities and minor ‘imperfections.’ ”
In a Facebook post, Leo’s mother, Ruzan Badalyan, said she was concerned about raising a child with Down syndrome in Armenia: “The first thing that came to my mind after the diagnosis was that I don’t want my child to live in a country where certain stereotypes dominate the lives of people with DS.”
In reality, Armenia has laws in place to prevent discrimination against people who are differently-abled, but those laws aren’t always enforced or haven’t had the desired effect on changing societal attitudes. Armenia has signed and ratified all the basic human rights protocols of the United Nations, including the Convention on the Rights of Persons with Disabilities, and has enacted its own national policy with specific protocols for the elimination of discrimination and protection of children who are differently-abled. But just because such laws are in place doesn’t ensure their enforcement or the availability of enough resources to make sure the differently-abled are afforded the same opportunities as their typical peers.
In 2005, Armenia developed an Inclusive Education program aimed at improving specialized schools and bringing more children who are differently-abled into “mainstream” schools. However, statistics show that out of 6,800 school-age children who are identified differently-abled, only about 4,500 attend schools.
Children with Down syndrome deserve the same basic human rights as any other child regardless of what culture they are born into, especially the right to live a life free of discrimination and bigotry. It’s not just parents in countries like Armenia where help is needed in the pursuit of these rights. Even in the United States, where awareness of Down syndrome and acceptance of the differently-abled are considered important ideals, Down syndrome remains one of the least-funded genetic conditions by the National Institutes of Health, despite being the most frequently occurring chromosomal condition.
The more than $500,000 raised for Baby Leo shows that people understand that families need more resources to raise a child with Down syndrome. Forrest has said that “We will use some of the money you’ve given to fund facilities and programs here in Armenia that will support future parents to keep their kids despite all disabilities, and to help better care for the special ones who end up away from their Mum and Dad.”
Increased awareness can lead to action, and those actions can lead to further research and education that will improve the lives of all people with Down syndrome. Accordingly, Global is committed to basic research at the Linda Crnic Institute for Down Syndrome, and clinical research at the Anna and John J. Sie Center for Down Syndrome, and to providing research and educational grants both domestically and internationally.
Support Global’s research, medical care, education and advocacy efforts by donating today, and help make the future brighter for all people with Down syndrome, whether born in Armenia, the U.S. or anywhere around the world.
March 3rd, 2015 by Global Down Syndrome Foundation
The Sie Center’s Dr. Francis Hickey and Global’s Michelle Sie Whitten present at the national otolaryngology conference in Vail.
Since the late 1960s, the University of Colorado School of Medicine’s Department of Otolaryngology has hosted the “Ultimate Colorado Midwinter Meeting,” a national Otolaryngology (Ears, Nose, Throat, or “ENT”) conference in Vail. This year, the conference organized its first Down syndrome-specific panel of experts. The panel had over 70 attendees, including ear, nose and throat physicians, audiologists, physician assistants and nurse practitioners.
The panel of Down syndrome experts included:
- Dr. Kathleen Sie, Professor at the University of Washington School of Medicine, Director of the Childhood Communication Center at Seattle Children’s Hospital, Co-Director of the Cochlear Implants Program
- Dr. Francis Hickey, Medical Director of the Sie Center for Down Syndrome at Children’s Hospital Colorado
- Emily Nightengale, Audiologist at Children’s Hospital Colorado
- Dr. Norm Friedman, Associate Professor and Director of Children’s Sleep Medicine Laboratory at Children’s Hospital Colorado
- Dr. Craig Buchman, Director of the Ear and Hearing Center and the Skull Base Center, Administrative Director of the W. Paul Biggers Carolina Children’s Communicative Disorders Program, Professor and Vice Chairman for Clinical Affairs, Chief of the Division of Otology/Neurotology and Skull Base Surgery at the University of North Carolina
Michelle Sie Whitten, President and CEO of the Global Down Syndrome Foundation, opened the panel by providing a parent and advocacy group perspective. Whitten commented after the panel, “It is wonderful to have so much interest from the medical community in terms of how best to treat patients with Down syndrome – what a great dialogue we had!”
Medical professionals attending the panel were interested in understanding what it means when 50 percent to 90 percent of children with Down syndrome have hearing loss, sleep apnea, and/or other ENT-related issues.
Part of the mission of the multi-disciplinary team at the Sie Center for Down Syndrome at Children’s Hospital Colorado is to engage in clinical research and provide best practices to medical professionals providing care to patients with Down syndrome through speaking opportunities and through publications. For more information on the Sie Center or to make an appointment, call 720-777-6750.
March 3rd, 2015 by Global Down Syndrome Foundation
The renowned researcher passed away recently. The Crnic Institute and Global pay tribute to his instrumental work in cognition.
Recently, we lost Dr. Karl H. Pfenninger to his battle with brain cancer. Dr. Pfenninger was one of four principal investigators at the Linda Crnic Institute for Down Syndrome and a professor of pediatrics at the University of Colorado School of Medicine. He was also director of the Colorado Intellectual and Developmental Disabilities Research Center (IDDRC), a position formerly held by Linda Crnic, the namesake of the Crnic Institute.
Throughout his scientific career, Dr. Pfenninger has contributed greatly to the field of neuroscience, particularly the study of how nerves develop and make connections. In recent years Dr. Pfenninger’s work was focused on intellectual disability and how development of nerves is involved. Dr. Pfenninger’s research with Amyloid Precursor Protein (APP), a protein encoded on chromosome 21, aimed to determine how this protein, already known to be the one that triggers Alzheimer’s disease, was functioning during nerve development. His research focused primarily on studying excess expression of this protein in Down syndrome. People with Down syndrome have three copies of chromosome 21 instead of the typical two. These studies implicated the APP protein in proper functioning of developing nerves.
His laboratory has also developed a mouse that expresses excess APP to determine if this affects brain development, with the hope of better understanding whether APP over-expression in people with Down syndrome causes problems with neurodevelopment and cognition. Dr. Pfenninger was also cataloging all the proteins found in the tips of developing nerves to try to better understand the complexity of nerve growth and function.
Dr. Pfenninger was an inaugural recipient of the Crnic Grand Challenge Grant for his APP research. His lab’s results suggest that early intervention with therapies to reduce APP levels could help to ameliorate cognitive deficits in Down syndrome. Some of his most recent published research appeared in “Nature Cell Biology” in May 2014, “The SNARE Sec22b has a non-fusogenic function in plasma membrane expansion,” and in The Journal of the Federation of American Societies for Experimental Biology in January 2014, “Dosage of amyloid precursor protein affects axonal contact guidance in Down syndrome.”
Besides being a dedicated scientist, mentor, colleague, and friend, Dr. Pfenninger will be remembered for his love of travel, photography, opera, and espresso, and will be sorely missed by members of the Linda Crnic Institute for Down Syndrome, the Global Down Syndrome Foundation, and the rest of the research community.
March 3rd, 2015 by Global Down Syndrome Foundation
on World Down Syndrome Day at Children’s Hospital Colorado. Mrs. Sie is a loving grandma and longtime supporter of the differently-abled.
The Global Down Syndrome Foundation is proud to announce longtime supporter Anna Sie will receive the Global Community Leadership Award at the World Down Syndrome Day celebration at Children’s Hospital Colorado on Friday, March 20, 2015. The celebration is co-hosted by Global and the Sie Center for Down Syndrome – one of the largest pediatric medical care centers dedicated to children with Down syndrome.
Mrs. Sie, along with her husband, John J. Sie, is the founding donor of the Global Down Syndrome Foundation, the Linda Crnic Institute for Down Syndrome, and the Anna and John J. Sie Center for Down Syndrome at Children’s Hospital Colorado.
She is also co-trustee of the Anna and John J. Sie Foundation, one of the largest funders of nonprofits dedicated to people who are differently-abled. Mrs. Sie’s philanthropy and advocacy focuses on issues relating to children’s welfare, health care, education and media. Her commitment to improving the lives of people with Down syndrome and the differently-abled is inspired by her granddaughter Sophia, who happens to have Down syndrome.
“I want to make sure our granddaughter will benefit from anything we do,” Mrs. Sie said. “But that can’t happen if we don’t get to the bottom of these health issues for all people with Down syndrome. Helping my granddaughter, and the millions of others like her, is my mission and my passion in life.”
Mrs. Sie, a native of Italy, immigrated with her father and several brothers to the United States in 1955 and grew up in New Jersey. Her mother and two younger brothers came to America three years later. Her passion for the welfare of children was forged through her own experience in coming to America.
Anna and her husband John moved to Colorado in 1984 and have contributed to many aspects of Colorado’s growth. Together they have raised five children and are the proud grandparents to Sophia, Patrick, Benjamin and Shaela.