Archive for the ‘Blog’ Category

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.”