11.14.20CTRNASCSNETCAN
November 14th, 2020 by Global Down Syndrome Foundation
Exclusive Coverage on ET Canada
NIH Award Funds Data Coordinating Center
for Down Syndrome Research
November 9th, 2020 by Global Down Syndrome Foundation
The new initiative will fuel collaboration and discovery about the biology of Down syndrome and its co-occurring medical conditions
Press Contacts:
Amanda Hilll Linda Crnic Institute for Down Syndrome | amanda.a.hill@cuanschutz.edu | C: 303.724.9907
Bobby Moulder Center for Data Driven Discovery in Biomedicine | moulderr@email.chop.edu | C: 484.258.8539
Hsiao-Ching Chou Sage Bionetworks | chou@sagebionetworks.org | C: 206.696.3663
DENVER, CO November 5, 2020 Scientists and data experts are joining forces to create the world’s first centralized platform for Down syndrome researchers to share, access, and analyze data. The goal of the new initiative, called the “Data Management and Portal for INCLUDE (DAPI) Project,” is to accelerate discoveries and advance medical care for individuals with Down syndrome. The National Institutes of Health (NIH) recently awarded a grant totaling $19.5M over five years to develop the center as part of the INCLUDE Project (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE).
The DAPI Project is co-led by Dr. Adam Resnick, Director of the Center for Data Driven Discovery for Biomedicine (D3b) at Linda Crnic Institute for Down Syndrome at the University of Colorado Anschutz Medical Campus, and Dr. Justin Guinney, Vice President of Computational Oncology at Sage Bionetworks. DAPI Project leaders will work closely with NIH INCLUDE Project staff to develop the center. This collaboration brings together strong expertise in Down syndrome research and open, data-driven science.
“We expect this new data center will be an impactful resource for the INCLUDE Project and the larger Down syndrome research community,” said Dr. Charlene Schramm, NIH Program Officer for the award. “The goal is to create a world-class portal for data sharing and analysis that will encourage innovative investigations into Down syndrome comorbidities across the lifespan.”
Dr. Melissa Parisi, one of the leaders of the NIH INCLUDE Project, added “The DAPI Project will combine data from existing research cohorts of individuals with Down syndrome with new cohorts. By building common data and shared analytic platforms, this project hopes to create a rich resource to help advance our understanding of these co-occurring conditions and support future therapeutic development.”
The INCLUDE Project is a trans-NIH initiative launched in 2018 to support research into conditions that affect individuals with Down syndrome and the general population. More than six million individuals living with Down syndrome have an increased risk of developing a wide range of medical conditions, such as certain autoimmune disorders and Alzheimer’s disease. At the same time, they are protected from some of the largest killers of the general population, including solid cancers and certain heart disease. Therefore, a key goal of the INCLUDE Project is to decode the underlying biology that alters these and many other co-occurring medical conditions in individuals with Down syndrome.
“Coordinated discovery efforts in this population not only have the potential to directly improve the lives of individuals with Down syndrome, but also to impact millions of other people affected by numerous related and co-occurring conditions,” said Dr. Espinosa of the Crnic Institute.
To enable these investigations, the mission of the DAPI Project is to create a world class platform for data sharing, data access, and integrative analysis in Down syndrome. The platform will empower scientists, physicians, and the community with tools to elicit evidence-based action in the laboratory, clinic, classroom, government, and society at-large.
“More and more, the scientific community is demonstrating the power of platforms to connect different communities with diverse areas of expertise and datasets to drive surprising discoveries and accelerated impact across a broad number of conditions in both children and adults,” said Dr. Resnick of D3b. “The DAPI Project will build on these efforts through the implementation of new technologies and platforms that will empower large-scale, diverse INCLUDE datasets on behalf of individuals with Down syndrome and other associated medical conditions and diseases.”
The DAPI Project is organized into three cores, roughly centered at each of the three partner organizations:
- Data Portal Core.Led by Dr. Resnick at D3b, the Data Portal Core oversees the development of the web-based data portal, which will be the public-facing centralized platform for data sharing and analysis. Dr. Resnick and the team at D3b are recognized leaders in collaborative, data-driven science, with expertise in pediatric cancers and diseases and large-scale data visualization and analysis.
- Data Management Core. Led by Dr. Guinney at Sage Bionetworks, the Data Management Core directs the overall data management practices for the DAPI Project, including protocols for data collection, governance, harmonization, processing, and sharing. Sage Bionetworks is a non-profit biomedical research organization devoted to responsible, open data-sharing practices, with broad expertise in computational and systems biology, as well as neurodegenerative diseases.
- Administrative and Outreach Core.Led by Dr. Espinosa at the Crnic Institute, the Administrative and Outreach Core leads outreach, education, and stakeholder engagement efforts for the scientific and Down syndrome communities, as well as overall project management. Dr. Espinosa and the Crnic Institute team are leading Down syndrome researchers who also administer a large Down syndrome research program at the University of Colorado.
Additional experts from Centre Hospitalier Universitaire Sainte-Justine, Oregon Health and Science University, Oregon State University, Seven Bridges Genomics, and Vanderbilt University Medical Center will also collaborate with the DAPI Project team.
“We have created a truly exceptional team with diverse expertise to accomplish the mission of the DAPI Project,” said Dr. Guinney of Sage Bionetworks. “We are all excited and honored to work with the NIH, the Down syndrome research community, and each other on this new endeavor.”
DAPI Project operations began in early October, including efforts to identify existing Down syndrome cohorts and data already established by researchers, to engage in ‘listening tours’ to understand the needs of the researcher and Down syndrome communities, and to develop frameworks for data governance, standardization, and management. The DAPI Project team aims to release the first version of the public data portal in 2022, while continuing to refine and expand the platform thereafter.
About the Center for Data Driven Discovery in Biomedicine (D3b)
The Center for Data Driven Discovery in Biomedicine (D3b) is a translational biomedical research Center of Emphasis at the Children’s Hospital of Philadelphia Research Institute. D3b’s multi-disciplinary expertise is accelerating bench-to-bedside research on behalf of children diagnosed with cancer and other rare conditions. D3b’s seven collaborative units bring together experts in oncology and basic research, genomics, data science, bioinformatics, neurosurgery, and other research-related disciplines to discover breakthroughs for every child, every time, everywhere. To learn more about the D3b Center, visit https://d3b.center/.
About the Linda Crnic Institute for Down Syndrome
The Linda Crnic Institute for Down Syndrome is the first academic research center fully devoted to improving the lives of people with Down syndrome through advanced biomedical research, spanning from basic science to translational and clinical investigations. Founded through the generous support and partnership of the Global Down Syndrome Foundation, the Anna and John J. Sie Foundation, and the University of Colorado, the Crnic Institute administers a thriving Down syndrome research program involving over 50 research teams across four campuses on the Colorado Front Range. To learn more, visit www.crnicinstitute.org or follow us on Facebook and Twitter @CrnicInstitute.
About Sage Bionetworks
Sage Bionetworks is a nonprofit biomedical research and technology development organization that was founded in Seattle in 2009. Our focus is to develop and apply open practices to data-driven research for the advancement of human health. Our interdisciplinary team of scientists and engineers work together to provide researchers access to technology tools and scientific approaches to share data, benchmark methods, and explore collective insights, all backed by Sage’s gold-standard governance protocols and commitment to user- centered design. Sage is a 501c3 and is supported through a portfolio of competitive research grants, commercial partnerships, and philanthropic contributions. To learn more, visit https://sagebionetworks.org.
About Global Down Syndrome Foundation
The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. GLOBAL has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,000 patients with Down syndrome from 28 states and 10 countries. Working closely with Congress and the National Institutes of Health, GLOBAL is the lead advocacy organization in the U.S. for Down syndrome research and care. GLOBAL has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer's and Cognition Center – all on the Anschutz Medical Campus.
GLOBAL's widely-circulated medical publications include GLOBAL Medical Care Guidelines for Adults with Down Syndrome, Prenatal Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome WorldTM. GLOBAL also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (facebook & twitter:@GDSFoundation)(instagram:@globaldownsyndrome).
MULTIPLATINUM ARTIST RACHEL PLATTEN, THE FRAY’S ISAAC SLADE, & THE RANSOM NOTES TO PERFORM AT GLOBAL’S BE BEAUTIFUL BE YOURSELF FASHION SHOW
October 28th, 2020 by Global Down Syndrome Foundation
Exclusive $25 Tickets Gives a Remarkable Opportunity to
Experience this Inspirational and Star-studded Celebration
Press Contacts:
Anca Call | acall@globaldownsyndrome.org | C: (720) 320-3832
Rejena Carmichael | rcarmichael@globaldownsyndrome.org | C: (240) 603-5494
DENVER, CO October 28, 2020 – Today, the Global Down Syndrome Foundation (GLOBAL) announced Multiplatinum Artist Rachel Platten, The Fray’s Isaac Slade, and The Ransom Notes will all perform at GLOBAL’s one-night only virtual Be Beautiful Be Yourself Fashion Show on Saturday, November 14, 2020. Platten will perform her iconic “Fight Song” and “Better Place,” while Slade will perform “How to Save a Life” in tribute to COVID-19 survivors with Down syndrome. The Ransom Notes will share their wonderful Folk-Americana-Bluegrass music all the way from Nashville.
For the first time ever, GLOBAL is offering tickets at only $25 that will provide an extraordinary opportunity for people from across the U.S. and the world to attend this award-winning, inspirational, and star-studded event.
An impressive list of over thirty celebrities will be supporting GLOBAL’s annual fundraiser including Music Legend Quincy Jones, supermodel Beverly Johnson, model Madeline Stuart, award-winning actors and brothers Matt Dillon and Kevin Dillon, award-winning actors John C. McGinley, Zack Gottsagen, Jamie Brewer, and Megan Bomgaars; motivational speaker Tim Harris, Denver Broncos Von Miller, Brandon McManus, Justin Simmons, Phillip Lindsay, and Jake Butt, reality show host Jeff Probst, Golfer Brad Hennefer, Buffalo Bills’ Harrison Phillips, R&B power couple Ronnie & Shamari DeVoe, and musician Sujeet Desai, among others already announced. This year’s Quincy Jones Exceptional Advocacy Awards will honor two powerful women: Grey’s Anatomy star Caterina Scorsone and Spanish model Marián Ávila. Celebrities are showing up in full force to support GLOBAL and honor the accomplished awardees.
Celebrities will virtually escort 25 beautiful models from 8 states and 3 countries down the runway. Model and 2020 GLOBAL Ambassador Walt Snodgrass is excited and ready, “I can’t wait to share my moves. It is so fun to be in the GLOBAL fashion show. But GLOBAL is also important for my health, and the health of everyone with Down syndrome.”
Chairs Jill and Lou Rotella III could not agree more. “The Global Down Syndrome Foundation just published the first-ever evidence-based medical care guidelines for adults with Down syndrome. They are delivering for our community on so many levels and they need our help now more than ever. We hope others will step up and support GLOBAL during this difficult time.”
“Quincy Jones himself introduced us to DeOndra as one of the most articulate, irrepressible, magnetic people he had ever met,” says Michelle Sie Whitten, GLOBAL’s President and CEO. “GLOBAL has lost our talented, intelligent, feisty, beautiful, kind, loving, caring, pure and giving heart, DeOndra Dixon. Our Down syndrome community has lost a beacon of hope, a true leader, and role model whose aim was to always help others.”
To continue the work and fight for the Down syndrome community, GLOBAL created a Q&A on COVID-19/Down syndrome, provided over 140 families and 42 Down syndrome organizations with COVID-19 Emergency Relief Global Grants, and supported legislation that fights discrimination against those with disabilities during crisis triage care situations.
For more info on Be Beautiful Be Yourself Fashion Show on Saturday, November 14, 2020 at 6:30pm MST:
The event itself will be hosted on ClickBid, a virtual event platform with live stream, auction and donation options. A virtual access code will be sent to ticket holders and can be used on multiple devices.
To support GLOBAL’s work, please consider a donation.
To learn more, visit: www.bebeautifulbeyourself.org
To buy tickets, visit: https://bebeautifulbeyourself.org/buy-tickets/
About Global Down Syndrome Foundation
The Global Down Syndrome Foundation (Global) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. Global has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,000 patients with Down syndrome from 28 states and 10 countries. Working closely with Congress and the National Institutes of Health, Global is the lead advocacy organization in the U.S. for Down syndrome research and care. Global has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus.
Global’s widely-circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome WorldTM. Global also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (facebook & twitter:@GDSFoundation)(instagram:@globaldownsyndrome).
ON THE SCIENCE FRONTLINES: DOWN SYNDROME RESEARCH AT THE CRNIC INSTITUTE IS HELPING FIGHT AGAINST COVID-19
October 22nd, 2020 by Global Down Syndrome Foundation
From Down Syndrome WorldTM 2020 Issue 2 of 4
AMID A WORLD-WIDE PANDEMIC, THESE SCIENTISTS HAVE FOUND THEMSELVES IN A UNIQUE POSITION TO HELP, THANKS TO YEARS OF STUDYING THE EXCEPTIONAL BIOLOGY OF PEOPLE WITH DOWN SYNDROME.
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!
CONTRIBUTING IN A MEANINGFUL WAY to the body of science and medical practice surrounding an unprecedented world-wide pandemic is not something most people ever get the opportunity to do. It certainly was not what Executive Director of the Linda Crnic Institute for Down Syndrome, Dr. Joaquín Espinosa, and his team of scientists were thinking about in early March 2020.
During this time, the University of Colorado Anschutz Medical Campus (CU) shut down all research operations, locking scientists out of their buildings and laboratories in response to and to prevent the spread of the novel coronavirus (COVID-19) pandemic. Thankfully, Dr. Espinosa and the Crnic Institute team had their valuable experiments and supplies already gathered and stored away safely. With numerous grants from the National Institutes of Health (NIH), the National Science Foundation, and others, the team had plenty of work that could be performed remotely – analyzing data, writing up results for scientific journals, and preparing new proposals for funding.
Their biggest worry was something they could not work on remotely – the delay of their NIH clinical trial grant to treat autoimmune diseases in people with Down syndrome. In 2016, shortly after launching the Crnic Institute Human Trisome ProjectTM (HTP), the Crnic Institute made one of the most important scientific discoveries – Down syndrome can and should be characterized as an immune system disorder.
In particular, they discovered that an immune system pathway called the “interferon pathway” was “lit up” in people with Down syndrome pretty much 24/7, versus in typical people where it is only turned on when they are fighting a virus or infection and then it turns off.
The constant taxation of the immune system in people with Down syndrome creates low intensity inflammation that over time probably contributes to the co-occurrence of various diseases, including dementia. The Crnic Institute discovery was even more consequential because there are FDA-approved drugs that turn down the interferon pathway in typical people. Crnic Institute scientists were about use one of these FDA-approved drugs, a JAK inhibitor called tofacitinib, in an unprecedented clinical trial for adults with Down syndrome when the pandemic forced lab closures around the world.
AN “AH HA” MOMENT
As serendipity would have it, two days into quarantine, the Crnic team was doing a quick review of the research literature on COVID-19. Their findings revealed something that was both shocking and yet made perfect sense – it appeared that hospitalized COVID-19 patients were displaying many of the same patterns of immune system dysregulation that the Crnic Institute team had spent years studying, analyzing, and annotating in people with Down syndrome.
In COVID-19, the body’s antiviral defense system, which utilizes the interferon pathway, is sent into overdrive, causing the release of high levels of inflammatory signaling molecules known as cytokines. In COVID-19 and other viral infections, this “cytokine storm” is associated with respiratory distress, heart damage, and higher mortality rates. Similarly, people with Down syndrome have higher-than-normal levels of interferon signaling and often display more of a mini cytokine storm, even without a viral infection. Crnic Institute scientists believe this could contribute to many of the hallmarks of and co-occurring medical conditions associated with Down syndrome and are working to understand those connections.
Within a week, Dr. Espinosa and the Crnic Institute were one of a handful of research teams allowed back, with COVID-19 safety measures, into their labs to work on COVID-19 treatments for the general populations and to understand the connection and possible affects and treatments on people with Down syndrome.
Today, Dr. Espinosa is the leader of an international consortium looking at JAK inhibitors to treat COVID-19. The treatment is one of several clinical trials that Dr. Anthony Fauci, Director of the National Institute of Allergy and Infectious Disease at the NIH, has been supporting in the United States. The international consortium includes labs from the United States, China, Italy, France, Spain, Argentina, Mexico, Canada, Germany, and Denmark.
COVID-19 COULD BE MORE SEVERE FOR PEOPLE WITH DOWN SYNDROME
In reviewing the COVID-19 literature, Crnic Institute scientists also realized that people with Down syndrome should probably be considered a “high-risk” group for COVID-19. “High risk” means a person who gets COVID-19 has a higher probability of experiencing more severe illness than a member of the general population without other risk factors. This idea rests on the basis that the strength of the cytokine storm in COVID-19 correlates with disease severity and outcomes, and that people with Down syndrome will be more likely to develop a stronger, more prolonged cytokine storm due to higher levels of baseline interferon signaling. Although the direct studies of COVID-19 in Down syndrome needed to prove or disprove this idea have not yet been performed, ample supporting evidence already exists in the context of other viruses and in our basic understanding of immunology in Down syndrome.
It is also important to consider that people with Down syndrome have increased susceptibility to bacterial pneumonia. Although seemingly unrelated, it has been well documented that pandemics of respiratory viral infections are followed by a surge in cases of bacterial pneumonia, and that a large portion of deaths are actually attributed to secondary bacterial infections. Children with Down syndrome have much higher rates of viral pneumonia and bacterial pneumonia, with the latter being a leading cause of mortality in adults. Taken together, these known phenomena suggest that a person with Down syndrome who contracts COVID-19 would have an increased risk of also acquiring bacterial pneumonia.
PUTTING TOGETHER ALL THE EVIDENCE:
#1 – People with Down syndrome have higher levels of interferon signaling.
#2 – Once infected, people with Down syndrome have an increased risk of experiencing a stronger cytokine storm and thus a more severe case of COVID-19.
#3 – Both during and after infection with SARS-CoV-2, people with Down syndrome will be more likely to also contract bacterial pneumonia.
It is important to note that these are hypotheses and predictions based on existing evidence outside of COVID-19 and should be taken into consideration with caution. The studies needed to fully understand COVID-19 in people with Down syndrome are still just starting to get underway. The good news is, there are people with Down syndrome, with and without underlying conditions, who are surviving COVID-19. We simply need more data and to better understand this virus before we can definitively come to conclusion.
HOW DOWN SYNDROME RESEARCH FROM THE CRNIC INSTITUTE IS BEING UTILIZED TO STUDY AND TREAT COVID-19
Since March, every member of Dr. Espinosa’s team, from the basic scientists to the clinical researchers, and even the administrators, have been utilizing their unique skills and knowledge gained while working in Down syndrome to rapidly advance COVID-19 research at CU.
For example, Crnic Institute scientists immediately started testing potential therapeutics for the COVID-19 cytokine storm in their mouse model of Down syndrome, nicknamed Dp16. They weren’t actually exposing the Dp16 mice to SARS-CoV-2; they didn’t need to. Instead, the scientists could activate the immune system and stimulate a cytokine storm much like what is seen in COVID-19, simply by using a molecule that tricks the immune system into sensing a virus when there isn’t one. Crnic scientists then treat the mice with JAK inhibitors targeting the interferon signaling pathway that is chronically activated in people with Down syndrome and that drives the cytokine storm in COVID-19. The data resulting from these experiments will be extremely valuable because it can be interpreted and utilized in two contexts: COVID-19 and Down syndrome.
FIGHTING COVID-19 TOGETHER
Who would have ever guessed that Down syndrome research and the discovery that interferon signaling is chronically activated in people with Down syndrome would one day so greatly impact the science and research behind a historic, global pandemic? This meaningful contribution to the body of science and medical practice surrounding COVID-19 is something the Down syndrome community should be proud to be part of. Together, this community of researchers, self-advocates, families, and supporters can clearly make positive scientific impacts not only for people with Down syndrome, but also for the entire world.
THE CRNIC INSTITUTE HUMAN TRISOME PROJECTTM IN ACTION AGAINST COVID-19
At the beginning of the quarantine, CU assembled a centralized team tasked with rapidly creating a biobank to collect blood and other biological samples from COVID-19 patients. These samples would then be administered to researchers with approved projects. This model essentially replicates one of the Crnic Institute’s flagship research initiatives, the Crnic Institute Human Trisome ProjectTM (HTP). The HTP is generating multiple layers of “omics” data (think big data from sequencing all of someone’s DNA and RNA and measuring all their proteins, metabolites, immune cells, and much more) on hundreds of people with and without Down syndrome in order to understand the hallmarks of and co-occurring medical conditions associated with Down syndrome. Having heard about the Crnic Institute’s HTP and Biobank, the CU COVID-19 team reached out to Crnic scientists to tap into their expertise. The Crnic team shared detailed protocols and helped advise the CU team during the development of the CU COVID-19 Biobank.
As part of a synergized endeavor with the COVID-19 Biobank, leading researchers at CU also partnered with Dr. Espinosa and the Crnic team to replicate the experimental platform from HTP and apply it to COVID-19. The parallel effort by CU to apply the HTP platform to COVID-19 has been aptly dubbed “The COVIDome Project,” and Crnic scientists are leading the ongoing data generation to advance COVID-19 research for better diagnostics and therapeutics.
The Crnic team is also partnering with a national COVID-19 collaborative group to specifically study COVID-19 in people with Down syndrome. As explained earlier in this article, so much is yet unknown about COVID-19 in Down syndrome and numerous studies are needed to understand its impacts. The team is working with top data scientists at CU to identify differences in risk factors, symptoms, clinical course, immunological parameters, response to various treatments, and outcomes and long-term effects of COVID-19 in people with Down syndrome. Alongside these efforts, the Crnic team is also studying individuals with Down syndrome who have recovered from a SARS-CoV-2 infection as part of the HTP, in order to assess changes induced by COVID-19 across all the layers of omics data. Together, Crnic scientists hope these efforts will advance our understanding of interferon signaling and the cytokine storm in COVID-19 and Down syndrome and
inform the development of customized preventative and therapeutic solutions.
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A Team Effort: Why This Award Isn’t Just For Me
October 13th, 2020 by Global Down Syndrome Foundation
A Team Effort: Why This Award Isn’t Just For Me
By: Ashley Sparhawk, 2020 recipient of the Colleen Barrett Award for Administrative Excellence
Ashley Sparhawk, 2020 recipient of the Colleen Barrett
Award for Administrative Excellence
Thank you so much to Colleen Barrett for selecting me to be this year’s recipient. I am thrilled to be named the 2020 Denver Admin Awards recipient of the Colleen Barrett Award for Administrative Excellence. I was so humbled just to be nominated, so it is truly an honor to receive this prestigious award in your name.
Thank you Admin Awards for putting on such a fun and meaningful event! It’s been a tough year, but you all pulled off a great event. When Christine Fiero (2018 recipient of the Colleen Barrett Award for Administrative Excellence) brought the Admin Awards to my attention by nominating me last year, I knew I had to be involved (win or not) with this fantastic and unique organization for years to come. The Admin Awards is such a wonderful tribute to administrative professionals’ hard work and importance around the country.
I would like to recognize all the talented and hardworking admins nominated (especially the other Colleen Barrett finalists Bonnie Azevedo and Lori Lucero, plus my everyday partner at Global, Marisa, also a finalist in the Office Manager of the Year category). I’m honored to call you my peers.
Thank you everyone who nominated me! I owe this to you.
I want to dedicate this award to my boss, Michelle Sie Whitten, President and CEO of the Global Down Syndrome Foundation. I would not be here if it weren’t for you.
Michelle works tirelessly day in and day out to ensure that people with Down syndrome are given better lives through education, research, medical care and advocacy. It’s such an honor to work alongside you every day, to learn from you and to help transform the lives of people with Down syndrome.
Seven years ago, Michelle took a chance on me. Listening to and learning from Michelle over the years has been the most amazing and rewarding experience. She’s taught me how to be a strong woman in the workplace, a thoughtful colleague and how to always push for the best.
Michelle has this great gift of pinpointing the best qualities in her staff, maximizing on what they’re good at and elevating those talents to then help the greater good of our organization to ultimately to help individuals with Down syndrome.
I really wanted to make a difference in the world and I found that at the Global Down Syndrome Foundation. I love what I get to do every day. We work so hard, but we also have fun. And of course nothing beats that rewarding feeling of knowing that we are truly making a difference.
Thank you to the Admin Awards and Colleen Barrett for this honor. I will continue to strive to be a strong woman in the workplace, provide excellent customer service to my colleagues and constituents, and embody this award’s spirit.
Most of all thank you Michelle. I’m honored to call you my colleague, my friend, my role model.
GREY’S ANATOMY STAR CATERINA SCORSONE AND SPANISH MODEL MARIÁN ÁVILA TO RECEIVE GLOBAL’S PRESTIGIOUS “QUINCY JONES AWARDS”
August 26th, 2020 by Global Down Syndrome Foundation
GLOBAL’s Virtual Be Beautiful Be Yourself Fashion Show attracts an impressive roster of celebrities with a NEW DATE – Saturday, November 14, 2020
Press Contacts:
Anca Call | acall@globaldownsyndrome.org | C: (720) 320-3832
Rejena Carmichael | rcarmichael@globaldownsyndrome.org | C: (240) 603-5494
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DENVER, CO August 26, 2020 – Today, the Global Down Syndrome Foundation (GLOBAL) announced two powerful women who will receive this year’s Quincy Jones Exceptional Advocacy Awards: Grey’s Anatomy star Caterina Scorsone and Spanish model Marián Ávila. Celebrities are showing up in full force to support GLOBAL and honor the accomplished awardees.
The awards will be presented during GLOBAL’s annual Be Beautiful Be Yourself Fashion Show, the largest fundraiser for Down syndrome in the world, having raised over $20 million for life-changing research and medical care. Due to COVID-19 and restrictions on in-person gatherings, the event will be held virtually with a new date: Saturday, November 14, 2020.
Caterina Scorsone has starred in numerous television and film roles, portraying powerfully complex characters that have captured the hearts of audiences around the world. She is most well-known for playing the reckless, yet compelling “Dr. Amelia Shepherd” on ABC’s Grey’s Anatomy. Scorsone has three beautiful children including her three-year-old, Pippa, who was born with Down syndrome. Since the birth of Pippa, Scorsone has been a consistent supporter of GLOBAL’s work. For the last three years, Scorsone has used her formidable platform to promote greater understanding and awareness, end stigmas around people who are differently-abled, and to encourage greater access and inclusion.
Marián Ávila is an accomplished Spanish model from Barcelona, who happens to have Down syndrome. She has modelled in ad campaigns for big name brands like Levi’s and El Corte Ingles and participated in the fashion industry’s biggest Fashion Weeks, including New York Fashion Week. She has been featured in worldwide media, including leading publications such as New York Times, Vanity Fair, and Harper’s Bazaar. Ávila uses social media to meet other people and gain visibility, without judgements or labels, and to help others. She calls herself a feminist and an advocate of human rights, family, and friendship.
Other confirmed celebrities include Academy and Grammy Award winner Jamie Foxx; award-winning actors John C. McGinley, Zack Gottsagen, Jamie Brewer, and Megan Bomgaars; Denver Broncos’ Brandon McManus, world-renowned swimmer Karen Gaffney, and Colorado Rapids’ Kellyn Acosta; award-winning speakers, journalists, and TV anchors DeOndra Dixon, Frank Stephens, Kyra Phillips, John Roberts, Kim Christiansen, and Tom Green; R&B power couple Ronnie & Shamari DeVoe; and supermodel Amanda Booth. More celebrities and self-advocates will be announced in the coming weeks.
The Be Beautiful Be Yourself Fashion Show will consist of a VIP Reception with more intimate celebrity experiences for table sponsors and a quality virtual event on Saturday November 14, 2020. The event will feature GLOBAL’s 2020 Ambassador Walt Snodgrass, 18 beautiful models from 7 states and 2 countries, honorees and celebrities, and special segments including a dance battle between GLOBAL Ambassador DeOndra Dixon and her big brother Jamie Foxx.
“I know that COVID-19 has led to tough times for so many,” says GLOBAL Ambassador DeOndra Dixon, “but we have to pull together and continue to support GLOBAL and people with Down syndrome in need. I will miss the runway and the audience, but I am excited to make the virtual event a success and beat my brother in an epic dance battle!”
“Most people with Down syndrome are high risk for COVID-19, so we have put a lot of effort into education and protection over the last five months,” says GLOBAL President and CEO, Michelle Sie Whitten. “The pandemic has presented GLOBAL with many challenges this year, and we’ve met each one with strength, clarity of purpose, and compassion. We hope that people will support our first virtual event and that they know we will work hard to truly save and transform lives.”
In response to the world-wide pandemic, GLOBAL has worked hard to get out multiple versions of an informative Q&A on COVID-19/Down syndrome, provide over 140 families and 42 Down syndrome organizations with COVID-19 Emergency Relief Global Grants, and support legislation that fights discrimination against those with disabilities during crisis triage care situations.
The Be Beautiful Be Yourself Fashion Show allows GLOBAL to protect people with Down syndrome during this pandemic with their COVID-19 initiatives, provide world-class care to over 2,000 patients with Down syndrome from 28 states and 10 countries, and fund over 200 scientists working on Down syndrome research with a focus on Alzheimer’s disease, cancer, and autoimmune disorders. The event also underwrites our advocacy in D.C., resulting in a tripling of the National Institutes of Health Down syndrome research budget, as well as outreach to over 12,000 families.
To support GLOBAL’s work, please consider a donation.
To learn more, visit: www.bebeautifulbeyourself.org
To buy tickets, visit: https://bebeautifulbeyourself.org/buy-tickets/
About Global Down Syndrome Foundation
The Global Down Syndrome Foundation (Global) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. Global has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,000 patients with Down syndrome from 28 states and 10 countries. Working closely with Congress and the National Institutes of Health, Global is the lead advocacy organization in the U.S. for Down syndrome research and care. Global has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus.
Global’s widely-circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome WorldTM. Global also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (facebook & twitter:@GDSFoundation)(instagram:@globaldownsyndrome).
Global Webinar Series – Spring 2020 Recap
July 10th, 2020 by Global Down Syndrome Foundation
SPRING 2020
Government Funding for Down Syndrome Research Triples – What This Could Mean for Children & Adults with Down Syndrome
What You Need to Know
Overview
The exciting new Down syndrome research at the National Institutes of Health (NIH) and the NIH INCLUDE Project (INvestigation of Co-occurring conditions across the Lifespan to Understand Down syndromE). How families and Down syndrome organizations can participate in, and benefit from research. How to use powerful medical registry resource, DS-Connect®, under the Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD), and learn about research opportunities. A new clinical trial aimed at normalizing immune function in Down syndrome to cure autoimmune skin conditions and improve cognitive function and quality of life. The Crnic Institute Human Trisome ProjectTM, the most ambitious dataset for people with Down syndrome that serves as a discovery engine aimed at the diseases that people with Down syndrome are highly predisposed to (e.g. Alzheimer’s disease and autoimmune disorders) and protected from (e.g. solid tumor cancers).
Speakers
Dr. Melissa Parisi |
Dr. Joaquín Espinosa |
PDF Presentation: Download Government Funding for DS Research
Dr. Melissa Parisi
PDF Presentation: Download Scientific Research in the INCLUDE Era
Dr. Joaquín Espinosa
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Information received from Global’s employees or volunteers, or from this website, should NOT be considered a substitute for the advice of a medical professional or lawyer. Globaldownsyndrome.org DOES NOT provide any medical or legal advice. You should consult with your own doctor or lawyer for medical or legal advice. This website is a general service that provides information over the internet. The information contained on this website is general information and should not be construed as medical advice to be applied to any specific factual situations.
GLOBAL Webinars:
Healthy Boundaries and Relationships
CPAP, Hearing Aids, & Glasses, Oh My! How to Help my Child & Adult Wear their Medical Equipment
What Families Need to Know: Utilizing the Pediatric Medical Care Guidelines for Down Syndrome
Self-Advocates Win Landmark Federal Funding for Research: Join GLOBAL – Join the Movement
Take A Deep Breath: Lung Infection & Cognition in Down Syndrome
Supporting Aging Adults with Down syndrome and Alzheimer’s Disease
Developing an Individualized Feeding Plan for Your Child with Down Syndrome
Get Moving, Be Awesome! – Physical Therapy & Fitness for Adolescents & Adults with Down Syndrome
Promoting Skills to Survive & Thrive in the Teen & Adult Years
Multimodal Approach to Teaching Children with Down syndrome Speech & Language Skills
DESPITE CORONAVIRUS, CELEBRITIES SIGN UP IN FULL FORCE FOR GLOBAL’S BE BEAUTIFUL BE YOURSELF FASHION SHOW
June 30th, 2020 by Global Down Syndrome Foundation
Jamie Foxx, DeOndra Dixon, Caterina Scorsone, John C. McGinley, Walt Snodgrass and more support the World’s Largest Event Benefitting People with Down Syndrome
Press Contacts:
Anca Call | acall@globaldownsyndrome.org | C: (720) 320-3832 Rejena Carmichael | rcarmichael@globaldownsyndrome.org | C: (240) 603-5494 |
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DENVER, CO June 30, 2020 – Today, the Global Down Syndrome Foundation (GLOBAL) announced an impressive roster of dedicated celebrity supporters for its marquee Be Beautiful Be Yourself Fashion Show scheduled for Saturday, October 3. The annual event is the largest fundraiser for Down syndrome in the world, raising over $20 million to date for life-saving and transformative research and medical care.
The star-studded roster includes Academy and Grammy Award winner Jamie Foxx; award-winning actors John C. McGinley, Zack Gottsagen, Jamie Brewer, Megan Bomgaars, and Caterina Scorsone; Denver Broncos’ Brandon McManus, world-renowned swimmer Karen Gaffney, and Colorado Rapids’ Kellyn Acosta; award-winning speakers, journalists, and TV anchors DeOndra Dixon, Frank Stephens, Kyra Phillips, John Roberts, Kim Christiansen, and Tom Green; R&B power couple Ronnie & Shamari DeVoe; and supermodel Amanda Booth. A full roster of celebrities will be announced in the coming weeks.
The event will honor GLOBAL Ambassador Walt Snodgrass from Omaha, Nebraska. Walt is a sophomore at Westside High School, where he is fully included. He runs track and plays in the school band, and is part of “Sparklers” Cheer and the unified bowling team. Walt is a staunch advocate for inclusion. His contributions to his family and community, his zest for life, and compassion for others make him beloved wherever her goes. “I love modeling in GLOBAL’s fashion show in Denver, showing the world what people with Down syndrome can do. Together, we are changing the world,” says Walt. During the fashion show, 20 brilliant and beautiful models with Down syndrome will rock the runway, including GLOBAL’s Ambassador.
“At GLOBAL we are taking COVID-19 very seriously, and we are closely monitoring and following government guidelines to determine the format of the fashion show,” says Michelle Sie Whitten, GLOBAL President and CEO. “As of now, we are planning a smaller in-person event and a larger virtual component that we hope will be every bit as magical and inspiring.”
In response to the COVID-19 pandemic, GLOBAL has been a leader for the Down syndrome community – creating important resources like the Down syndrome/COVID-19 Q&A and supporting legislation that prohibits discrimination so that people with Down syndrome and other disabilities can receive COVID-19 medical care in the event there is medical care rationing. GLOBAL also provided COVID-19 Emergency Relief Global Grants to over 100 individuals with Down syndrome and their families needing food, medicine, and shelter, and most recently GLOBAL provided over 31,000 pieces of personal protective equipment (PPE) to people with intellectual and developmental disabilities who are wards of the state in Colorado.
Proceeds from GLOBAL’s Be Beautiful Be Yourself Fashion Show underwrite GLOBAL’s direct help to the community, excellent quality health care to over 2,000 patients with Down syndrome from 28 states and 10 countries, and transformative research focused on the relationship between Down syndrome and Alzheimer’s disease, solid tumors, autoimmune disorders and more.
To support GLOBAL’s work, please consider a donation.
To learn more, visit: www.bebeautifulbeyourself.org
To buy tickets, visit: https://bebeautifulbeyourself.org/buy-tickets/
About Global Down Syndrome Foundation
The Global Down Syndrome Foundation (Global) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome. Global has donated more than $32 million to establish the first Down syndrome research institute supporting over 400 scientists and over 2,000 patients with Down syndrome from 28 states and 10 countries. Working closely with Congress and the National Institutes of Health, Global is the lead advocacy organization in the U.S. for Down syndrome research and care. Global has a membership of over 100 Down syndrome organizations worldwide, and is part of a network of Affiliates – the Crnic Institute for Down Syndrome, the Sie Center for Down Syndrome, and the University of Colorado Alzheimer’s and Cognition Center – all on the Anschutz Medical Campus.
Global’s widely-circulated medical publications include Global Medical Care Guidelines for Adults with Down Syndrome, Prenatal Testing and Information about Down Syndrome, and the award-winning magazine Down Syndrome WorldTM. Global also organizes the Be Beautiful Be Yourself Fashion Show, the largest Down syndrome fundraiser in the world. Visit globaldownsyndrome.org and follow us on social media (facebook & twitter:@GDSFoundation)(instagram:@globaldownsyndrome).
GLOBAL Statement – Black Lives Matter Movement
June 5th, 2020 by Global Down Syndrome Foundation
Dear Families, Friends and Colleagues,
The Global Down Syndrome Foundation (GLOBAL) is deeply saddened by the senseless killing of George Floyd. We mourn for his family and every person who has been a victim of violent acts perpetrated in hateful discrimination.
Today we stand together with people from all over the world. We call for justice and demand systemic change that will protect us from racism, discrimination and brutality. Even beyond protection we demand real change that provides equity in research, medical care, education, the justice system, and every area that allows us freedom and the opportunity of good health, productivity, and happiness.
We maintain that if you believe in the inalienable rights for one group you must believe in them for all people. As Congresswoman Eleanor Holmes Norton said “You can’t be for women’s rights and not for disability rights. You can’t be for disability rights and not believe in racial equality. You can’t believe in racial equality and not in the LBGT community. The only true narrative is equity for all humankind.”
People with intellectual and developmental disabilities and their family members can relate to discrimination based on our own differences – and to a history that includes the Willowbrook State School and Aktion T4 murders.
At GLOBAL we condemn racism and discrimination in all forms. Black Lives Matter to us and to the world.
Wishing you health, safety and hope during these difficult but transformative times,
Michelle Sie Whitten and the GLOBAL Team
Make Your Voice Heard. We encourage you to help educate your communities by sharing information and resources on social media using the #BlackLivesMatter hashtag.
GLOBAL DOWN SYNDROME FOUNDATION, NATIONAL DOWN SYNDROME CONGRESS, & INTERNATIONAL MOSAIC DOWN SYNDROME ASSOCIATION EXPAND COLLABORATIONS
May 7th, 2020 by Global Down Syndrome Foundation
Lifespan of Resources will have a National and International Impact
Press Contacts:
GLOBAL: Rejena Carmichael | rcarmichael@globaldownsyndrome.org | C: (240) 603-5494
NDSC: Rhonda Rice | rhonda@ndsccenter.org | C: (678) 770-6641
IMDSA: Brandy Hellard | bhellard@imdsa.org | C: (513) 571-4186
DENVER, ATLANTA, Stow MA. May 07, 2020– Today, Global Down Syndrome Foundation (GLOBAL), the National Down Syndrome Congress (NDSC), and the International Mosaic Down Syndrome Association (IMDSA) have announced that they will expand existing collaborations aimed at consolidating and creating Down syndrome resources across the lifespan for families.
The three national organizations will contribute funding, national and international distribution, and coordinated annual staffing associated with the Prenatal Testing & Down Syndrome Information pamphlet, the NDSC Annual Convention Global Down Syndrome Research Roundtable, the IMDSA Research & Retreat conference, and the Global Medical Care Guidelines for Adults with Down Syndrome.
“Our organizations have been collaborating for years on these important print and conference resources,” says Michelle Sie Whitten, President and CEO of GLOBAL. “To be able to make our existing collaborative resources available for free, in different modalities, and in many different languages, will have a wonderful national and international impact.”
“NDSC is proud to help support numerous Down syndrome initiatives and organizations that help our self-advocates and families,” says David Tolleson, Executive Director of NDSC. “To have a strategic plan to link our existing collaborations – from prenatal to adult care – is so important for our self-advocates and families dealing with issues across the lifespan.”
“I so appreciate this opportunity to ensure that people with mosaic Down syndrome, and the issues they face at various stages of life, will be included in future NDSC-GLOBAL national research and medical care roundtables,” said Brandy Hellard, President of IMDSA. “We are excited to help distribute the prenatal and adult guidelines at our IMDSA Research & Retreat conference and to dovetail our research to support future iterations of the guidelines.”
Expanding Collaborations:
• Prenatal Testing & Down Syndrome Information pamphlet: This resource is a result of nationwide research that included input from 400 pregnant women and over 400 clinicians working with pregnant women. It is available for free in English, Spanish & Icelandic and will expand to several other languages in the next two years. Based on feedback from genetic counselors, the additional languages will include Arabic, Nepalese, Bengalese, French, and Greek.
• NDSC Annual Convention Global Down Syndrome Research Roundtable: This resource attracts between 400-500 attendees each year. The collaboration will expand to have a virtual component that can reach more attendees and will include streams on mosaicism, autism, and other important but small sub-populations.
• IMDSA Research & Retreat conference: This resource is an annual conference attracting attendees from all over the world each year. The collaboration will expand to have a virtual component that can reach more attendees and will also have a sub-focus of supporting the Global Medical Care Guidelines for Adults with Down Syndrome.
• Global Medical Care Guidelines for Adults with Down Syndrome: This resource will be published after four years of work incorporating eleven authors who are the lead clinicians serving adults with Down syndrome across the United States. The collaboration will include joint professional surveys and concerted support for guidelines questions that have little or no research today.
To access the resource, families, friends and professionals can visit the websites of GLOBAL, NDSC, and IMDSA.
Global Down Syndrome Foundation (GLOBAL)
The Global Down Syndrome Foundation (GLOBAL) is the largest non-profit in the U.S. working to save lives and dramatically improve health outcomes for people with Down syndrome.
National Down Syndrome Congress (NDSC)
The National Down Syndrome Congress (NDSC) is a not-for-profit organization dedicated to an improved world for individuals with Down syndrome.
International Mosaic Down Syndrome (IMDSA)
International Mosaic Down Syndrome Association (IMDSA) is designed to provide support, information and research to any family, individual or professional whose life has been affected by mosaic Down syndrome.
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