Archive for the ‘Blog’ Category

Be Beautiful Be Yourself Dancers to Perform in “Nutcracker”

December 2nd, 2017 by Global Down Syndrome Foundation

Colorado Ballet Academy Students with Cora Jane and Kristina

Two ballet students from the Global Down Syndrome Foundation’s Be Beautiful Be Yourself Dance Class have been cast by the Colorado Ballet for their official production of the holiday classic “The Nutcracker.”  Both students are part of the ensemble of children partygoers and will have plenty of stage time to show off their dance skills and shine!

Global’s star student, Cora Jane Thompson, will perform in the Thursday, Dec. 7th, showing and star student, Kristina Penfield, will perform in the Thursday, Dec. 14th showing. Both students will perform in the prime time 7:30pm showing of The Nutcracker at the Ellie Caulkins Opera House, 1101 13th Street in Denver.

Please support Global’s star students and our partner, the Colorado Ballet, by purchasing tickets to The Nutcracker performances on Thursday December 7th and Thursday December 14th at 7:30pm!!

The Global Down Syndrome Foundation’s Be Beautiful Be Yourself Dance Program is made possible by generous grants from the Melvin & Elaine Wolf Foundation, The Daniels Fund, and the Anna and John J. Sie Foundation.

Global is deeply grateful to its program donors and to our partners – the Colorado Ballet and the Sie Center for Down Syndrome at Children’s Hospital Colorado.  Our Be Beautiful Be Yourself Dance Class runs for two seasons a year. Each 16 week season is taught by Colorado Ballet professionals alongside Sie Center physical therapists and educators.  The program provides instruction on ballet movement, music appreciation, rhythm and basic dance steps as well as interpersonal skills, vocabulary and confidence building to students ages 5-14 who happen to have Down syndrome.

The program is designed as both a confidence builder to dance classes with typical peers and as a stand-alone dance class that gives students with Down syndrome the opportunity to make friends who also have the condition.

Over 30% of our students are scholarship recipients – to support the Be Beautiful Be Yourself Dance Class and our students in need, please make a donation today!

Congratulations, Cora Jane and Kristina! We are so proud of how hard you worked to be cast in The Nutcracker!  GOOD LUCK! We know you will SHINE!

 

Colorado Ballet Dancers Mackenzie Dessens and Gregory K. Gonzales with Kristina and Cora Jane

 

Colorado Ballet Studio Company Dancers with Kristina and Cora Jane


Watch our dancers featured on CBS 4 Denver here!


Watch our dancers featured on Colorado’s Best on Fox 31 here!


A SPECIAL THANKS TO OUR PROGRAM SUPPORTERS


 

A SPECIAL THANKS TO OUR PROGRAM PARTNERS


 

A SPECIAL THANKS TO OUR IN-KIND DONORS


Generous $1 million grant will help establish a much-needed education center at Global’s new international HQ in Denver 

Salah Foundation

Media Contacts:
Kathy Green | kgreen@globaldownsyndrome.org | (720) 280-9725
Anca Call | acall@globaldownsyndrome.org | (720) 320-3832

DENVER – The Global Down Syndrome Foundation (Global) today announced a transformative lead gift of $1 million from The Salah Foundation. Combined with the generous $1 million grant, Global will receive additional matching funds that will help to establish a center in Denver dedicated to educational activities primarily for people with Down syndrome but also for others who are differently-abled.

The gift was unveiled by Noreen Salah Burpee, executive director of The Salah Foundation, at Global’s annual record-breaking Be Beautiful Be Yourself Fashion Show held on Nov. 11, 2017, at the Sheraton Denver Downtown Hotel. The announcement brought a crowd of more than 1,300 including advocates with Down syndrome, their families, friends, supporters, and celebrities Quincy Jones, Jamie Foxx, DeOndra Dixon, Marisa Tomei, Joe Manganiello, John C. McGinley, Matt Dillon and Eva Longoria to their feet.

“We are so grateful for The Salah Foundation and Noreen for making this generous and impactful gift to the Global Down Syndrome Foundation,” said John C. McGinley, award-winning actor and Global board member after hearing the announcement backstage at the fashion show. “The team at Global works hard and is truly delivering for the Down syndrome community. This will allow them to reach even more people.”

“We are thrilled to support the work of the Global Down Syndrome Foundation as they continue to create extraordinary change in the lives of people with Down syndrome and their families,” said Salah Burpee. “We hope that others will follow suit and open their hearts and wallets to this important project.”

The education center will be housed in Global’s new international headquarters in Denver in the Cherry Creek Shopping North – one of the most popular districts in Colorado with the fastest growing foot traffic. It is anticipated that the multi-use education center will provide cooking classes, computer labs and other center-based educational programs for varying ages and abilities and will open sometime in the second half of 2018.

Global supports the research of hundreds of scientists around the world and helped establish the first and only academic home for Down syndrome research at the Crnic Institute for Down Syndrome at the University of Colorado School of Medicine at the Anschutz Medical Campus, with a focus on Alzheimer’s disease, cancer, and autoimmune disorders.

Global funding also helps provide the highest quality of comprehensive medical care to thousands of children with Down syndrome from around the world through the Sie Center for Down Syndrome at Children’s Hospital Colorado, coordinating medical care, along with therapies including speech, physical and occupational therapy.

“We are grateful for the continued support of The Salah Foundation as we advance our mission,” said Michelle Sie Whitten, president and CEO of the Global Down Syndrome Foundation. “Noreen, Fred, Megan and the whole Salah family have believed in our work, provided us guidance to expand, and now have given us this extraordinary gift that simultaneously increases our impact on people with Down syndrome and helps ensure my parents’ legacy. I can’t tell you how meaningful that is to us.”

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About The Salah Foundation

The Salah Foundation is a private foundation, by invitation only, that supports non-profit organizations in the United States that strengthen families and communities and advances individuals to become productive and responsible citizens. There is a special interest in education, medical research, community development, and self-sufficiency programs aimed at the economically disadvantaged, the young, the elderly and the disabled. To learn more, visit www.salahfoundation.org. 

About the Global Down Syndrome Foundation

The Global Down Syndrome Foundation is at the forefront of research, medical care, education and advocacy dedicated to significantly improving the lives of people with Down syndrome. Supporting the research of hundreds of scientists around the world, and through our advocates, partners, and affiliates including the Crnic Institute for Down Syndrome and the Anna and John J. Sie Center for Down Syndrome, Global is making an impact on the lives of people with Down syndrome today, and remain focused on finding solutions tomorrow. We are committed to helping people with Down syndrome realize their fullest potential and lead healthy and productive lives. To learn more, visit. www.globaldownsyndrome.org.

National Down Syndrome Adoption Network

November 6th, 2017 by Global Down Syndrome Foundation

All Children Deserve The Safety And Security Of A Loving Home.

In 1981, ROBIN and David Steele visited a children’s home in Cincinnati and fell in love with a little girl named Martha. After initially being told Martha was not available for adoption because she w as born with Down syndrome, the Steeles persisted — both adopting Martha and establishing the National Down Syndrome Adoption Network (NDSAN) so no other child with Down syndrome would ever be considered “unadoptable.”


This article was published in the award-winning Down Syndrome World™ magazine. Become a member to read all the articles and get future issues delivered to your door!

FOREVER HOMES
A program of the Down Syndrome Association of Greater Cincinnati (DSAGC), NDSAN is a free registry (not an adoption agency) that connects birth and adoptive families across the U.S. The Steeles — who eventually adopted four more children with Down syndrome and six other children who are differently-abled — recently stepped back from the organization but are still committed supporters. Since 2010, NDSAN has been under the capable leadership of Stephanie Thompson, who spent the previous 11 years working for DSAGC.

When birth parents call NDSAN, Thompson answers their questions and provides educational resources about raising children with Down syndrome to help allay any fears that might accompany the diagnosis. If they decide to give a child up for adoption, she helps them develop a birth plan.

Families interested in adopting a child with Down syndrome can contact NDSAN after completing a home study. Thompson then searches NDSAN’s database for children who might be a good fit. Children with Down syndrome often have unique medical and developmental needs, and it is important that the family be a good fit for the child and vice versa. Thompson also helps get an adoption agency involved, if necessary, and continues to provide support after a child joins his or her new family.

“I can empathize with both adoptive and birth parents,” said Thompson, who has a 25-year-old son with Down syndrome. “I know how it feels to get a diagnosis of Down syndrome, and through that connection, birth parents feel comfortable asking me questions. If they want to make an adoption plan, I have a wonderful relationship with all of the adoptive families on our registry, whom I’m helping as well. It means the world to me these folks feel called to adopt a child with Down syndrome.”

“When we first learned of our son’s condition, we felt that there was little choice for us,” one family wrote in a letter to Thompson. “We may have made a very different decision if it w as not for your organization.”

EDUCATION AND OUTREACH

Thompson wants everyone involved in the adoption process to have the most up-to-date information about Down syndrome, and that includes medical professionals. NDSAN publishes booklets for healthcare providers so they can educate patients about all their options.

“If termination is talked about, we want adoption talked about as well,” she said.

She’s also reaching out to Down syndrome organizations that can help spread the word to members about both adoption and the many foster children with Down syndrome in their areas looking for forever homes.

“This can be a very emotional job,” Thompson said.

“But I can’t imagine doing anything else.”

Each year, the National Down Syndrome Adoption Network is contacted by approximately 125 expectant families, birth families, and agencies and helps 40 children find their adoptive families.

The article was published in Down Syndrome World™ magazine. Become a member to read the whole magazine and get future magazines delivered to your door!

$2.5 million initial commitment to launch project

DENVER –The Global Down Syndrome Foundation today announced that Biogen, a neuroscience leader has joined the Global Down Syndrome Foundation and the University of Colorado School of Medicine in a groundbreaking project that explores the connection between Alzheimer’s disease and Down syndrome.

The Crnic Institute Human Trisome ProjectTM (HTP) is an ambitious longitudinal and cross-sectional study that will recruit 1,000 individuals with Down syndrome (also known as Trisomy 21) and 500 typical individuals. Scientists and clinicians will sequence and study several layers of genomics information (all de-identified) from a single sample of blood. Saliva, stool and other samples are also being collected. The Crnic Institute HTP has already begun to significantly increase the speed of Down syndrome research and has enrolled nearly 300 participants in the first 11 months.

“People with Down syndrome have a different disease spectrum,” said Dr. Joaquín Espinosa, executive director of the Crnic Institute, and the principal investigator of the Crnic Institute HTP. “The Crnic Institute HTP will allow us to redefine Down syndrome from the least scientifically understood condition to one of the best understood conditions. In addition, it will provide unprecedented understanding of Alzheimer’s disease, autoimmune conditions, cancers and other medical conditions that people with Down syndrome are either very predisposed to or protected from, eventually enabling the development of new diagnostic and therapeutic tools.”

“This research will serve first and foremost people with Down syndrome, but also the millions of individuals without Down syndrome who are affected by the many medical conditions modulated by trisomy 21,” said Espinosa.

Biogen has committed more than $500,000 and additional in-kind resources to the Crnic Institute HTP to investigate the genome and epigenome of specific cell types in the blood that could inform the development of Alzheimer’s disease. This initial investment is being financed with funds from Biogen and $1 million from the University of Colorado School of Medicine at the Anschutz Medical Campus – home to the Linda Crnic Institute for Down Syndrome – with a matching gift of $1 million from the Global Down Syndrome Foundation.

“Down syndrome is still one of the least funded genetic conditions of the federal government, so we are extremely grateful for the commitment from CU and Biogen,” said Michelle Sie Whitten, president & CEO of the Global Down Syndrome Foundation. “This is just the beginning as we hope to attract other biopharmaceutical organizations and philanthropists committed to improving the lives of people with Down syndrome and other conditions.”

“The School of Medicine provides a home for outstanding biomedical research that leads to improved care for all,” said Dr. John J. Reilly, Jr., vice chancellor for health affairs and dean of the University of Colorado School of Medicine. “We are confident that this investment will have a significant impact on our understanding of the health of people with Down syndrome and that it will lead to discoveries informing the care we provide.”

“Our son is 38 years old and we are concerned that he may get Alzheimer’s,” said Jack and Penni Dorwart, whose son participated in the Crnic Institute HTP.  “We also know that if we have high- quality research that there is the potential to significantly improve not only our son’s life but millions of others with Down syndrome who have many other medical issues that prevent good quality of life. That is why we participated in this study and we encourage others to do the same. We are grateful to the Crnic Institute and the Global Down Syndrome Foundation for taking on this difficult work and advocating for our children and adults.”

Learn more about in the Crnic Institute Human Trisome ProjectTM or sign up to participate in the study.

Global Down Syndrome Foundation (Global) is a nonpartisan, leading research, medical care and advocacy organization for people with Down syndrome. Global believes strongly that all Americans, including members of our community, must have access to affordable, high-quality healthcare and health insurance coverage appropriate for their needs. Global urges Senators to keep key patient protections and health insurance coverage that are part of current law in any Affordable Care Act (also known as Obamacare) replacement bill that is considered by the Senate.

We encourage the Senate to:

  • Ensure that people with pre-existing conditions like Down syndrome continue to have access to affordable, high-quality health insurance – regardless of whether or not they currently have insurance;
  • Protect federal funding for Medicaid to ensure that people who received coverage under previous expansions won’t lose their insurance;
  • Remove caps on federal contributions to state Medicaid programs – caps could result in persons losing coverage or those maintaining Medicaid coverage seeing a reduction in covered medical services and higher out-of-pocket costs; and
  • Continue the Affordable Care Act provision that allows children up to age 26 to stay on their parents’ health insurance policies.

Time is of the essence – the Senate may hold a vote on this legislation this week. We urge all Global Down Syndrome Foundation advocates to contact your Senators immediately and urge the Senate to allow for a full and open debate on their healthcare proposal and to oppose any plan that removes current patient protections and coverage for individuals with Down syndrome. As the debate on health care reform continues, Global is engaged with our friends in Congress to protect the health and wellbeing of all individuals with Down syndrome.

Thank you for your advocacy and support!


representative

Corresponding Phone Script:

“Hi. My name is _________ and I live in [Hometown, State].

“I’m a volunteer and advocate with the Global Down Syndrome Foundation. I am deeply concerned that the Senate version of the American Health Care Act will not include protections that are important for people with Down syndrome. In particular, I am concerned that this bill [1) doesn’t guarantee insurance coverage for people with preexisting conditions, 2) cuts federal funding for Medicaid expansion, 3) establishes caps on federal funding for Medicaid, and/or 4) would not allow people to stay on their parents’ health insurance plans up to age 26 – include one or more based on your specific concerns].

“I am also concerned that the public will not have enough time to review and provide feedback on this bill. I hope Senator ____ will work with [his/her] colleagues to make sure that there is ample time for debate and input on this bill.

“These healthcare protections are extremely important not only for people with Down syndrome, but for all Americans.

“Thank you.”

Global researches anchor T21RS International Conference

June 12th, 2017 by Global Down Syndrome Foundation

msw-t21Global Down Syndrome Foundation is a founding member of the T21 Research Society.  The Society is the first non-profit scientific organization of researchers studying Down syndrome, founded to promote basic and transnational research on Down syndrome and to apply new scientific knowledge to develop improved treatments and cures. After hosting a successful first conference in Paris, the society hosted a second conference in Chicago from June 7th to 11th.  A number of Global affiliated scientists and scholars were invited to present their groundbreaking research:

Joaquin Espinosa, PhD
Associate Director for Science at the Global affiliated Linda Crnic Institute for Down syndrome
Understanding Down syndrome as an Interferonpathy: Espinosa’s explains the implications for the understanding of leukemia and other co-morbidities driven by trisomy 21

Ann-Charlotte Granholm-Bently, PhD
Researcher for the Down Syndrome-Alzheimer’s Disease Investigator program powered by Global, Linda Crnic Institute and the National Alzheimer’s Association
Novel mechanisms in Down syndrome pathophysiology: Designer receptors reveal an important role for noradrenergic systems in Down syndrome pathology

Roger Reeves, PhD
T21 President and a member of the Scientific Advisory Board for the Linda Crnic Institute for Down Syndrome
Breakthrough and oral communication sessions: Reeves lecture focuses on a specialized pro-resolution mediator approach to chronic inflammation in the Ts654Dn mouse model of Down syndrome

Katherine Waugh, PhD
Postdoctoral Fellow for the Crnic Institute
Flash Poster Presentation: Waugh’s presentation includes extensive perturbations of the immune system among individuals with Trisomy 21

Michelle Sie Whitten
Global President and CEO
Medical Policies for people with Down syndrome: Whitten discusses medical care for adults with Down syndrome and lifting barriers

Donna Willcock, PhD
Researcher for the Down Syndrome-Alzheimer’s Disease Investigator program powered by Global, Linda Crnic Institute and the national Alzheimer’s Association
Biomarkers of Alzheimer’s disease in Down syndrome: Wilcock shares how individuals with Down syndrome who have Alzheimer’s disease have a distinct neuroinflammatory phenotype compared to sporadic Alzheimer’s disease

Because Down syndrome research has generated findings that affect thinking regarding research on Alzheimer’s disease and solid tumor cancers, T21RS creates another forum for drawing attention to the need for further funding for Down syndrome research, which could in turn benefit everyone’s lives. Global and the Crnic Institute are at the forefront of this research and look forward to helping place a greater emphasis on collaborations worldwide.

The conference that presents the latest scientific developments in the field of Down syndrome research is powered by a dynamic team of scientists, researchers, and scholars from across the world:

Conference Organizers:

Roger Reeves, PhD
Johns Hopkins University School of Medicine

Jean Delabar, PhD
CNRS-ICM

Mara Dierssen, MD, PhD
CRG-Center for Genomic Regulation

John O’Bryan, PhD
University of Illinois Chicago

Scientific Program Committee:

Mara Dierssen, MD, PhD- Chair
CRG-Center for Genomic Regulation

Anita Bhattacharyya, PhD
University of Wisconsin-Madison

Cynthia Lemere, PhD
Harvard Medical School

Jean Delabar, PhD
CNRS-ICM

Dean Nizetic, MD, PhD
Nanyang Technological University Singapore

Jorge Busciglio, PhD
University of California-Irvine

Nicole Schupf, PhD, DrPH
Columbia University Medical Center

Pablo Caviedes, MD, PhD
University of Chile

Deny Menghini, PhD
Bambino Gesu Children’s Hospital

For more info on T21RS, visit T21RS.org.

Global Employment Grant Winners thriving in communities across US

May 16th, 2017 by Global Down Syndrome Foundation

Down Syndrome Association of Wisconsin (DSAW)
Down Syndrome Connection of the Bay Area
GraceSigns
The Up Side of Downs of Northeast Ohio (USOD)

Initiated in 2016, Global Down Syndrome Foundation’s Self-Advocate Employment Initiative Grants have empowered local Down syndrome organizations to help hire 32 individuals with Down syndrome. The accomplishments of the organizations and the individuals they employ are creating significant impacts in their communities across the nation.

Global is so proud to be able to support these wonderful member organizations through the Employment Grants. The Grants will be offered again next year and applications will open in December 2017. Eligibility to receive an Employment Initiative Grant is just one of the benefits of Global membership.


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Down Syndrome Association of Wisconsin (DSAW)

In 2016 DSAW used the funds from Global’s grant to support Andrew’s Voice— a business run by Andrew Gerbitz, a Self-Advocate, that brings Down syndrome awareness, mentoring, and self-advocacy to different communities. Andrew’s Voice allows Andrew the opportunity to make a job out of something he loves to do, speak in public on behalf of those impacted by Down syndrome.

Andrew shares his excitement to be involved with these presentations:

“I love DSAW because they do so many amazing things for my life. DSAW helps me with my business, Andrew’s Voice, like at the Milwaukee County Zoo when I got to share about my business. I like doing the Peer Sensitivity Trainings and being a motivational speaker to teach other people that we are more alike than different. Going to schools to speak is fun especially because I like working with kids. Speaking at the Golf Outing was a huge success. It is a great to be with other self-advocates. Going to La Crosse to speak was another good memory. Helping with DSAW is fun because I get to hang out with my friends and other self-advocates. I like to be a good role model and help others. Being on the DSAW board is very important to me and helping out with DSAW events”— Andrew Gerbitz.


Down Syndrome Connection of the Bay Area

After a successful first grant year, Down Syndrome Connection of the Bay Area (DSCBA) will employ several self-advocates. Support from Global in 2016 allowed four associates to grow their professional and personal skills. In 2017 the grant will continue to enable the initial four employees expand their responsibilities, in addition add a fifth employee.

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  • In 2016 Eli conducted 22 ability awareness presentations in Bay Area schools reaching more than 1,000 students and nearly 70 adults – throughout different grade levels – who have a  classmate with Down syndrome. As the Ability Awareness Associate, Eli’s new tasks will include participating in some DSCBA support groups and supporting the technology portion of his  awareness presentations.
  • Not only did Marissa become more engaged in her role as an ambassador, but she became a master of public engagement through PowerPoint presentations and visual cues. In 2017, as the Community Outreach Associate she will create a social media campaign to give her the opportunity to use her voice creatively.
  •  Gaining more independence in her job tasks is one of the biggest accomplishments K. Leigh gained as the DSCBA Assistant Teacher. K. Leigh’s new tasks include leading circle time with kids, and she will be assigned specific children who she can provide one-on-one support to.
  • Joseph, the Administrative Assistant, took initiative in 2016 by seeking assistance when he was stuck on tasks— like preparing mailers and medical outreach packets. As Joseph’s confidence continues to grow in 2017 his new tasks will include increasing his efficiency and being able to accept coaching from co-workers in a constructive and professional manner.
  • The grant money was so helpful DSCBA was able to add a fifth employee— Malia— to their staff in 2017. Malia reports directly to DSCBA Director of New Family Services, Nancy Ferguson, and she is responsible for assembling the organizations new parents packs and with materials as needed.

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GraceSigns

GraceSigns is making major strides in communication opportunities for kids with and without disabilities. The mission of the non-profit is to teach sign language in a way that is easy, accessible, and fun! Photos taken at a GraceSigns filming session for the Sign Me a Song Project show how busy the organization is in fulfilling this mission.

With Global’s grant the organization has expanded and continue their subcontract with Futures Explored, Inc.—an organization that employs adults with developmental disabilities. Futures Explored helps with the production and filming of GraceSigns’ signing videos and hires adults with Down syndrome to assist with camera work, sound set up, and videotaping.

Sign Me A Song, like GraceSigns first app Sign Me A Story, embeds sign language into stories and songs— a learning technique GraceSigns founder Valerie R. Carter believes is a more successful approach in teaching sign language.


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The Up Side of Downs of Northeast Ohio (USOD)

Global’s grant played an instrumental role in helping the Up Side of Downs of Northeast Ohio blossom in the Independence, OH community— and will continue to in 2017.2016 was a banner year for USOD, and Global is thrilled to have supported their growth. Carrie is an Office Assistant with USOD who helps with data entry, builds new parent packets, and prepare for events and USOD’s learning program. In May 2016 Carrie’s duties expanded to handling inventory when USOD opened their unique gift shop filled with treasures created by individuals with Down syndrome, Artful 21. With the success of Artful 21, USOD hired two additional self-advocates — Tiffany and Shira.

“I learn so much from this job. I like the computer, data entry work. I like doing any tasks that I am given. I support the Up Side of Downs because I have Down syndrome,” Carrie said. “Mine was one of the original families and I feel attached in a way to the Up Side of Downs. I never thought I’d be working here and I’ve been here two years. It’s the best. I learn from everyone here. Working on the computer here has helped me with my other job at the Cleveland Clinic.”

People with Down syndrome and their families are Republicans, Democrats, and Independents. As a nonpartisan, leading research and advocacy organization, the Global Down Syndrome Foundation (Global) is focused on protecting and furthering the rights of people with Down syndrome regardless of party. To this end, we are deeply engaged with developments associated with health care reform, and we are providing an update to our friends and supporters on how this legislation may impact individuals with Down syndrome, how our community can participate in this national debate and take action.

Several weeks ago, President Trump, House Speaker Paul Ryan and other Republican leaders introduced the American Health Care Act (AHCA) to repeal and replace major pieces of the Affordable Care Act also known as Obamacare. The President could not garner enough votes within the Republican Party to pass the AHCA in the House. However, the President and his administration along with several members of Congress have continued negotiating further modifications to this legislative proposal and it is possible that the House of Representatives will schedule a vote as early as this week.

Global is encouraged that certain Obamacare provisions have been retained by the new proposal such as parents being allowed to keep their children up to age 26 on their health insurance policy. However, as the newly negotiated proposal stands, Global is concerned that there is not enough protection for people with pre-existing conditions. Given that Down syndrome may be considered a pre-existing condition by many health insurers and given the prevalence of other pre-existing conditions like certain cancers, and diabetes among individuals with Down syndrome, the importance of this issue cannot be overemphasized.

In particular, we respectfully urge our President and Congress to not include state waivers that would allow health insurers to charge much higher premiums to Americans with pre-existing conditions. We also oppose elimination of the “essential health benefits” requirement meaning health plans could discontinue coverage for many crucial medical services.

If you share these concerns, or have other concerns, please contact your local U.S. Representative and let them know that these areas of health care should not be sacrificed and that the most vulnerable Americans need protection.

As Congress continues debate on health care reform, Global is dedicated to working with our friends on both sides of the aisle, and with our Down syndrome and differently-abled communities, to ensure that people with Down syndrome continue to have access to affordable, quality health insurance.

Thank you for your advocacy and support!


Want to reach out to your U.S. Representatives to voice your concerns? Here’s a script to follow if you do contact them: 

“Hi.  My name is _________ and I live in [Hometown, State].  I’m a constituent and Global Down Syndrome Foundation advocate.  My mailing address and/or email address is _______________ so that you can send me a response to my call.

I understand that the House of Representatives is considering legislation that would make changes to the patient protections in the Affordable Care Act.

I am particularly concerned about a provision in the legislation that would allow health insurers to charge much higher premiums to Americans with pre-existing conditions.

Some health insurance plans consider Down syndrome to be a pre-existing condition.  Additionally individuals with Down syndrome have a much greater chance of having other pre-existing conditions like cancer, heart disease, and diabetes.

I am also deeply concerned that the bill would eliminate the “essential health benefits” requirement meaning health plans could discontinue coverage for many crucial medical services.

Please tell the Representative about these concerns and ask that they refrain from passing health reform legislation that eliminates these important patient protections and limits the scope of medical services available to our community.

Thank you.”

Global sending best of luck to models in Second Annual Sea Bunita Sea Bo Mes !

April 30th, 2017 by Global Down Syndrome Foundation

Global sends congratulations to all the models, organizers, and self-advocates in Aruba for the second annual Sea Bunita Sea Bo Mes!

Two of the models who will be rocking the runway in Aruba this year were also models at Global’s Be Beautiful Be Yourself Fashion Show! We wish the best of luck to Jake, Shawndré, and to all of the other models in this year’s fashion show.

We are honored to have been invited to the event. Global is busy preparing for a summer of advocating and financially supporting research and medical care for people with Down syndrome, which has prevented us from attending. In our absence, President and CEO Michelle Sie Whitten offers words of encouragement and support for this amazing event in Aruba!


Since 2013, Hans Geerman, President and Director of the Fundación Sea Bunita Sea Bo Mes, has been working on the Dutch Caribbean island of Aruba to change the way people see individuals with Down syndrome.

“We started organizing different events to make the Aruban community more aware of integration and inclusion for people with Down syndrome,” Geerman said.

Originally, the foundation operated under the name Ban Papia,, which means “Let’s Talk,” until an influential trip to Denver to attend Global Down Syndrome Foundation’s 2015 Be Beautiful Be Yourself Fashion Show, where his son Shawndré modeled. The visit proved so inspirational that Hans decided to bring that experience back to the island.

“After the event, we returned to Aruba and sponsored the first Aruba fashion show as Fundación Sea Bunita Sea Bo Mes (Be Beautiful Be Yourself Foundation),” he said. “The show starred members of our community with Down syndrome as models and local business and media personalities as their escorts. The event was a sellout, and the feedback has been positive beyond what we could hope it would be.”

Writing essays, calculating fractions, and studying history— these are what fill a typical middle-schooler’s day.

But, Wednesday afternoon seven middle-school students joined forces with Global Down Syndrome Foundation to work towards a goal: get signatures for Global’s Petition of Support for Down syndrome research. And, the young scholars more than accomplished this. For two hours, 6th, 7th, and 8th graders from Stanley British Primary School (BPS) gathered 185 signatures at Lowry Town Center. The students weren’t alone in their efforts. Global guided them, and 3 self-advocates palled up with the students— a collaboration that was helpful and fun for everyone involved.

This teamwork originates from Global CEO and President Michelle Whitten’s daughter, Sophia, who attends Stanley BPS. Sophia’s homeroom class decided to do a Service Learning Project to learn about Down syndrome and why research for it is so important. Sophia also happens to have Down syndrome.

The students were enthusiastic to have a hands-on approach to understanding more about Down syndrome. Prior to the petition signing the students wrote speaking notes and role-played to prepare. And, their preparation paid off. Overall, there were positive reactions and the people to turn down signing the petition were far and few.

The face-to-face interaction students and self-advocates had with the community was successful in helping Global gain strides to our overall goal of 5,000 signatures. While Global made leaps in the number of signatures, we are still short of our target. Now more than ever it’s important to show lawmakers their communities support Down syndrome research. Help us reach our goal so we can present a compelling petition in D.C. later this year!

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Local media outlets highlighted the collaboration between Global and Stanley BPS to gain signatures. Whitten, Sophia , and Sophia’s classmate Addie Boyer all sat down with 9News to discuss the petition. Sophia and Addie explain why their class was involved in gathering signatures. You can watch the interview here!

Dr. Tom Blumenthal, executive director for the Linda Crnic Institute – a Global affiliate, and  Whitten also discussed the importance of World Down Syndrome Day and the details of Global’s WDSD event on March 21 with CBS 4. You can watch the discussion here!