Board of Directors
The Global Down Syndrome Foundation benefits from a diverse, knowledgeable Board of Directors who are committed to the Foundation’s goal of improving the lives of people with Down syndrome through programming, clinical and translational research and medical care, and ultimately eradicating the medical and cognitive ill affects of Down syndrome.
Tomago Collins
Tomago Collins
Vice President of Media Development, Kroenke Sports & Entertainment
Board Member, Global Down Syndrome Foundation
Tomago Collins joined Kroenke in 2003 and has been in his current position since 2012. Collins has managed media relations for the Denver Nuggets and media development across several Kroenke-owned businesses from Europe to the United States.
In his role as VP of Media and Player Development, Collins works closely with players, their agents, management and the coaching staff on off-court matters. Collins also has served as an advisor to numerous college coaches and professional athletes. Collins moved to Denver in 2003 to help launch Altitude Sports & Entertainment, a KSE-owned parent network of the Nuggets and Colorado Avalanche.
Prior to joining KSE, Collins worked as a sports copy editor and features columnist for The (Louisville) Courier-Journal, and lead writer and editor for CNN International. He edited and provided analysis for ‘Scorecasting – the hidden influences behind how sports are played and games are won‘ (Random House 2011), a book written by award-winning Sports Illustrated Senior Writer L. Jon Wertheim that explores behavioral economics and sports.
Collins holds undergraduate degrees from Yale College in Women’s Studies and Political Science, and is active in several education reform initiatives. He currently serves on the boards of Playing for Change; Colorado I Have A Dream Foundation and Colorado Make A Wish Foundation. He also works closely with the Global Down Syndrome Foundation.
Phil DiStefano
Phil DiStefano
Chancellor, University of Colorado Boulder
Ex-officio Board Member, Global Down Syndrome Foundation
Prior to his appointment as Chancellor on May 5, 2009, Dr. DiStefano was the top academic officer at CU-Boulder for eight years as the Provost and Executive Vice Chancellor for Academic Affairs. He served as interim chancellor twice during pivotal times in the University’s history.
Dr. DiStefano co-chaired the steering committee for CU-Boulder’s visionary strategic plan, Flagship 2030, conceived with campus, community and statewide input, to guide CU-Boulder for decades to come. Today, Dr. DiStefano is shepherding its implementation as Flagship 2030 moves from vision to reality.
Dr. DiStefano has served CU-Boulder for 37 years. He joined the University of Colorado in 1974 as an Assistant Professor of Curriculum and Instruction at the School of Education. His academic career flourished as he assumed a series of academic and administrative positions, including Professor, Associate Dean, Dean and Vice Chancellor. He was appointed Provost and Executive Vice Chancellor for Academic Affairs in 2001.
As Chancellor he works closely with students, faculty, staff, alumni, donors, governing officials, and business and community leaders in extending CU’s legacy as a preeminent national comprehensive research university. He sits on many boards including the board of directors of the Linda Crnic Institute for Down Syndrome.
A first-generation college graduate, Dr. DiStefano earned a Bachelor of Science degree from Ohio State University and a Master of Arts degree in English Education from West Virginia University. He holds a Doctorate in Humanities Education from Ohio State University, where he served as a teaching and research associate.
He began his educational career as a high school English teacher in Ohio. He has authored and co-authored numerous books and articles on various topics in literacy education. Dr. DiStefano and his wife, Yvonne, have been married for 42 years and are the parents of three grown daughters and one granddaughter.
Donald (Don) M. Elliman Jr.
Donald (Don) M. Elliman Jr.
Chancellor, University of Colorado Anschutz Medical Campus
A long-time executive in publishing, Don Elliman boasts a successful track record in business and a high-quality reputation in higher education.
Elliman worked at Time Warner for 32 years, retiring as an executive vice president of Time Inc. Other positions he has held include publisher of People Magazine and president of Sports Illustrated.
Most recently, Elliman was executive director of the University of Colorado School of Medicine’s Charles C. Gates Center for Regenerative Medicine and Stem Cell Biology on the Anschutz Medical Campus. He served for two years as chief operating officer for Colorado, assisting the governor in the management of all state agencies, and as chair of the Colorado Recovery Accountability Board, with responsibilities for oversight of spending in Colorado.
Previously, Elliman was director of the Colorado Office of Economic Development and International Trade, overseeing a wide range of economic development activities, including domestic and international business development, small business programs, the Colorado Tourism Office and the Colorado Economic Development Commission. He was president of Ascent Sports and of Kroenke Sports Enterprises, with oversight of business activities, including The Pepsi Center, The Denver Nuggets and The Colorado Avalanche.
Elliman has served as chair of the Children’s Hospital Colorado Board of Directors and co-chair of the campaign to raise funds for the new hospital. He also serves on the boards of Middlebury College, The Fitzsimons Redevelopment Authority and The Gates Family Foundation.
Don Elliman became interim chancellor on April 2, 2012. He was named chancellor by University of Colorado President Bruce Benson on Feb. 20, 2013.
Jena Hausmann
Jena Hausmann
President and CEO, Children’s Hospital Colorado
Ex-officio Board Member, Global Down Syndrome Foundation
With nearly 20 years of experience in healthcare administration, Jena Hausmann is one of the leading womenin healthcare in the US. As President and Chief Executive Officer for Children’s Hospital Colorado, she oversees an integrated healthcare system for children, which is affiliated with the University of Colorado School of Medicine.
With 700,000 patient visits annually and 593 licensed beds, Children’s Hospital Colorado has consistently ranked in the top ten children’s hospitals in the nation. Jena oversees the Children’s Hospital Colorado at the Anschutz Medical campus, the Children’s Hospital Colorado network of care in 17 locations in the metropolitan Denver area, the Children’s Hospital Colorado pediatric services at Memorial Hospital in Colorado Springs, and the newly opened Children’s Hospital Colorado South Campus, a full service generally licensed hospital in south Denver.
During her tenure, unprecedented increases in patient volume have been achieved. With employees now numbering over 5,000, Jena is proudest that Children’s Hospital Colorado continues its focus on the precious children and families it serves through a culture of intimacy, connection and purpose. In a reaffirmation of the values inherent in Children’s Hospital’s child and family focused culture, the scores for patient satisfaction and employee engagement rank among the highest in the US.
Jena joined Children’s Hospital Colorado in 2004 as the Vice President of Strategic Planning and Network of Care Operations and assumed the role of Senior Vice President and Chief Operating Officer in 2008. In May of 2015, Jena was named President and Chief Executive Officer.
She was motivated to become a healthcare administrator after watching a loved one go through the system in their final moments of life. After earning a master’s degree in Healthcare Administration from the University of Minnesota in 1996, Jena completed an administrative fellowship at the Fairview Health System in Minneapolis, MN. There, she helped redesign the care delivery and financing models for nursing home residents through a Robert Wood Johnson Foundation grant.
Following the fellowship, she served as the Director of Provider Relations at The University of Minnesota Medical Center, an organization consisting of a then recently-merged 500 bed community hospital and a 500 bed academic medical center. After 11 months in the role, she joined the senior management team and remained there for the next six years providing leadership over a large number of operational areas as well as planning and business development activities. The cultural and operational challenges in this merger of two large entities into a comprehensive, integrated health system prepared Jena for her executive role at Children’s Hospital Colorado.
In 2008, Modern Healthcare featured Jena as one of 12 “rising healthcare management stars.” Jena currently serves on the board of directors for the Metro North Chamber of Commerce. In 2012, she served as the March of Dimes’ March for Babies revenue chair and she served on the YMCA Metro Denver board from 2009-2012.
As a leading woman in healthcare, she annually mentors as many as 30 individual women at the CU School of Medicine as well as throughout the Children’s organization to help them understand their roles and opportunities and to demonstrate personally and professionally the ability of women to succeed in executive roles in healthcare.
Jena, her husband Kevin, and three children, Ellie, Andrew and Carson, find their life’s purpose is to provide much love and laughter each day.
Leslie Leinwand, PhD
Leslie Leinwand, PhD
Professor, Chief Scientific Officer, Biofrontiers Institute, University of Colorado at Boulder
Ex-officio Board Member, Global Down Syndrome Foundation
An expert in cardiovascular research, Leinwand is principal investigator of a Howard Hughes Medical Institute Grant and National Institutes of Health Cardiovascular Training Grant. She established and co-directs the University of Colorado’s Cardiovascular Research Institute (CU-CVI), a collaborative group of physicians, molecular biologists and geneticists. The team works to integrate research and clinical applications, as well as initiate effective treatment programs and preventive therapies.
“I believe that the Global Down Syndrome Foundation is poised to make a difference in the lives of people with Down syndrome through its support of basic and clinical research,” Leinwand says. “Research in Down syndrome is under-funded and tools are now available to make fundamental advances in understanding the mechanisms that result in the many challenges faced by people with Down syndrome that should in turn, lead to improvements in their lives. I am committed to these efforts as a scientist and friend to the Down syndrome community.”
Leinwand has authored more than 185 scientific publications and founded a biotechnology company, Myogen, which conducts clinical trials on heart medications. She is the former director of the Colorado Initiative for Molecular Biotechnology and served as the interim director of the Linda Crnic Institute for Down Syndrome. Leinwand received her Bachelor’s degree from Cornell University, her PhD from Yale University and did post-doctoral training at Rockefeller University.
John C. McGinley
John C. McGinley
Board Member, International Spokesperson, Global Down Syndrome Foundation, Award-Winning Actor
John C. McGinley is an actor, most notable for his roles as Perry Cox in Scrubs, Bob Slydell in Office Space, and Sergeant Red O’Neill in Oliver Stone’s Platoon. He has also written and produced for television and film.
McGinley, who is one of five children, was born in the Greenwich Village section of New York City, the son of Patricia, a schoolteacher, and Gerald McGinley, a stockbroker. He studied acting at Syracuse University, and later at New York University’s Tisch School of the Arts. Upon completing his education, McGinley worked Off Broadway and in Broadway productions, as well as a two-year stint on the soap opera Another World.
McGinley has had a prolific career, primarily as a supporting character actor. He worked continually throughout the 1990s, appearing in films such as Point Break (1991), Highlander 2 (1991), Article 99 (1992), Wagons East! (1994), Se7en (1995), The Rock (1996), Nothing to Lose (1997) and Office Space (1999) (McGinley improvised several takes about his character’s fondness for Michael Bolton).
In 2007, he had a role as Chuck in the film Are We Done Yet? He also had a small role as a gay highway patrolman in the film Wild Hogs. In 2001, McGinley began work as a regular on the NBC sitcom Scrubs as the acerbic Dr. Perry Cox. More recently, he was cast in the movie adaptation of the comic book Superman/Batman: Public Enemies, where he plays the classic Superman villain, Metallo.
Apart from acting, McGinley is actively involved in building awareness and being an advocate for people with Down syndrome. McGinley went after Scrubs because he wanted to stay in LA and be with his son, Max, who happens to have Down syndrome. While McGinley advocated for Max, and for his community, he took on a more public role and was recognized as “Parent of the Year” by ivillage.com. In 2011 John received the Foundation’s Quincy Jones Exceptional Advocacy Award for his work related to people with Down syndrome and people with developmental disabilities in general.
McGinley is a board member and international spokesperson for the Global Down Syndrome Foundation, and a key advocate for the Special Olympics campaign: “Spread the Word to End the Word.” The campaign educates against the use of the “R” word. McGinley’s written commentary on the “R” word was published by the Huffington Post and is one of the most compelling arguments written about the subject to date.
McGinley lives in California with his wife, Nichole Kessler, their two daughters and McGinley’s son, Max.
G.H. Jay Mills
G.H. Jay Mills
Founder & Owner, Jay’s Valet Parking LLC
Board Member, Global Down Syndrome Foundation
G.H. Jay Mills is the founder and owner of Jay’s Valet Parking LLC, one of the largest valet parking services in the Rocky Mountain region. Jay’s Valet Parking LLC currently operates in three states and employs several hundred people.
Jay is also a licensed real estate broker/owner and has earned the rare CRS and GRI designations. Jay served the United States as a decorated and honorably discharged Army veteran and is the father of an awesome young man named Maxx. Jay was fortunate to have many role models growing up, who encouraged him and helped him develop his passion for helping others. His passion is continuing his personal growth and to be surrounded by good, kind and loving people.
Over the past several years, Jay has volunteered for the Global Down Syndrome Foundation – from the Dare to Play Football with Ed McCaffrey where you’ll find him refereeing the big game day, to the Be Beautiful Be Yourself Fashion Show, where he spends countless hours helping to make the fundraisers a success. Jay joined the board of the Global Down Syndrome Foundation in 2011.
John J. Reilly, Jr
John J. Reilly, Jr
Vice Chancellor for the Office of Health Affairs, University of Colorado
Ex-officio Board Member, Global Down Syndrome Foundation
John J. Reilly, Jr., MD, became the dean of the University of Colorado School of Medicine and the University’s vice chancellor for health affairs on April 6, 2015.
Dr. Reilly came to CU Anschutz from the University of Pittsburgh, where he was the Jack D. Myers Professor and Chair of the Department of Medicine. He joined Pitt in 2008 after more than two decades with Brigham and Women’s Hospital in Boston.
He is a prolific researcher who has authored or co-authored more than 100 peer-reviewed research reports and co-authored chapters in two of the most well-known textbooks of internal medicine. His areas of interest include the genetic and environmental factors associated with chronic obstructive pulmonary disease (COPD) and the role of alveolar macrophage enzymes in emphysema, COPD and lung cancer.
Dr. Reilly, who holds the Richard D. Krugman, MD, School of Medicine Dean’s Endowed Chair, graduated from Harvard Medical School after earning an undergraduate degree in chemistry from Dartmouth College. He completed his residency in internal medicine at Brigham and Women’s Hospital and later completed a fellowship there in pulmonary and critical care medicine.
Dr. Reilly is certified by the American Board of Internal Medicine and by that Board’s Pulmonary Subspecialty Board. He also holds a Board Certificate of Competence in Critical Care, is a Fellow of the American College of Physicians, and is a past chair of the National Heart, Lung and Blood Institute Clinical Trials Study Section.
Ricki Rest
Ricki Rest
Principal, Bravada Partners, LLC
Board Member, Global Down Syndrome Foundation
Ricki RestRicki Rest sums up her volunteer work by saying, “I have chaired fundraisers for many organizations and have been on practically every board in town.” Her record more than confirms this. She has served on the boards of the Children’s Diabetes Foundation, the Women’s department of the Allied Jewish Federation of Colorado, The Advisory Board for Jewish Family Services, and the Women’s Board of National Jewish Medical and Research Center. While on this board, Ricki developed programs for board members to interact with young patients and their families. Ricki was responsible for creating the tributes to Golda Meir award recipients Arlene Hirschfeld and Carol Mizel. Most recently Ricki was an active member of the Board of Trustees of Shalom Park and chaired many fundraisers for this institution, along with creating tributes for many honorees.
During the last several years, Ricki has devoted herself to her family and working in real estate acquisitions and investments, while continuing to do ”a little something” for many organizations.
When her grandson, Chase Turner Perry, was born with Down syndrome in February 2006, along with continuing to work, Ricki has kept her philanthropic activity to a minimum in order to participate in every endeavor that will benefit Chase and others born with Trisomy 21. Most recently she participated in the Advisory Committee of the Rocky Mountain Down Syndrome Educational Fund and now furthers her commitment to assisting in awareness and fundraising for the continued development of the Anna and John J. Sie Center for Down Syndrome, the first pediatric facility in Colorado specializing in the medical treatment of children born with Down syndrome along with the Linda Crnic Institute for Down Syndrome, an institute created specifically for the purpose of eradicating the ill effects of Down syndrome.
A proud grandmother of eight, Ricki is a loving mother, wife and daughter.
Anna M. Sie
Anna M. Sie
Co-Trustee, Anna and John J. Sie Foundation
Board Member, Co-Founder, Global Down Syndrome Foundation
Anna M. Sie, co-founder of the Anna and John J. Sie Foundation, is active in serving the needs of people with Down syndrome and focuses on issues relating to children’s welfare, healthcare, education and media.
Anna, a native of Italy, immigrated to the United States in 1955 and grew up in New Jersey. It then took three years for her entire family to move to America. The immigration quota was such that only four people could come from one family at a time. Since she comes from a large family, some members stayed behind in Italy to await their turns. As a pre-teen, Anna was thrown into the difficult role of becoming the woman of the house. Her mother and two younger brothers came to America three years later. Her passion for the welfare of children was forged through her own experience in coming to America.
Anna is involved in many Italian-related endeavors in Colorado including endowing the Anna Maglione-Sie Chair in Italian Language and Culture – the first endowment in languages at the University of Denver, and establishing the Maria and Tommaso Maglione Italian Filmmaker Award at the Starz Denver International Film Festival.
In 2009, Anna and her husband, John, were named “Man and Woman of the Year” by The Villager and in 2010 they received the prestigious Community Cultural Enrichment Award from the Mizel Museum for their philanthropic work.
Anna and John moved to Colorado in 1984 when John took a position with Tele-Communications, Inc. (now Comcast and Liberty Media). Together they raised five children – Susan Sie, Dr. Debbie Sie, James Sie, Michelle Sie Whitten and Allison Sie. She has four grandchildren who she spends most of her free time with. One of her grandchildren happens to have Down syndrome.
The Anna and John J. Sie Foundation supports the sharing of knowledge amongst peoples and cultures throughout the global community, with an emphasis on Down syndrome, education, media, business, and technology. The Foundation supports Children’s Hospital Colorado, the University of Colorado, the University of Denver (DU), DU’s SIÉ CHÉOU-KANG Center for International Security and Diplomacy, Denver School of Science and Technology, Denver Art Museum and numerous other civic, social and educational institutions.
In 2008 and 2009 respectively, the Foundation became the founding donor of the Linda Crnic Institute for Down Syndrome and the Global Down Syndrome Foundation. The Crnic Institute is the first academic home for research and medical care for people with Down syndrome. Its mission is to eradicate the medical and cognitive ill effects associated with the condition.
John J. Sie
John J. Sie
Co-Trustee, Anna and John J. Sie Foundation
Chairman of the Board, Global Down Syndrome Foundation
John J. Sie is founder and former Chairman of Starz Entertainment Group LLC (SEG). Founded in 1991, the Colorado-based company is owned by Liberty Media Corporation and is the parent to numerous premium movie networks, including Starz and Encore. John is a cable television pioneer and leader. A consummate entrepreneur, John has successfully launched and managed many corporations, business lines and products. John is currently retired and has devoted himself to several impactful philanthropic initiatives and to his family.
John, a native of China, came to the United States at the age of 14 in 1950. He stayed at a Catholic orphanage on Staten Island, N.Y. until he graduated from high school in 1953. He received B.E.E. and M.E.E. degrees from Manhattan College and Polytechnic Institute of Brooklyn in 1957 and 1958, respectively. John is a member of the honor fraternity Sigma Xi and the service fraternity Alpha Phi Omega.
John began his professional career in 1958 when he joined the RCA Defense Electronics Division on advanced microwave solid state devices. In 1960, he co-founded and later became chairman and CEO of Micro State Electronics Corp, which later became a subsidiary of the Raytheon Co. In 1972, John joined Jerrold Electronics Corp, a subsidiary of General Instrument Co., as General Manager and Sr. Vice President of the Cable Television Division. In 1977, he joined Showtime Entertainment as Sr. Vice President of sales and marketing.
In 1984, John and his family moved to Colorado to join Tele-Communications Inc. (now Comcast and Liberty Media) as Sr. Vice President in charge of strategic planning, programming, marketing, technology, and government relations. Many people consider John the father of digital television – in 1989 he submitted the very first white paper on digital High Definition Television (HDTV) to Congress and the FCC that would dramatically change the landscape of television in the United States and the world.
Throughout his professional life, John received numerous awards and honors:
- 2017 Collectors’ Choice Honoree, Denver Art Museum
- 2015 Quincy Jones Exceptional Advocacy Award, Global Down Syndrome Foundation
- 2014 Humanitarian Award, Josef Korbel School of International Studies at the University of Denver
- 2014 Slice of Pi Honoree, Denver School of Science and Technology
- 2010 Community Cultural Enrichment Award, Mizel Museum
- 2009 Chinese American Hero, Asian Week Magazine; Man and Woman of the Year, The Villager
- 2008 Asian Pacific Americans in Business, Voices from Colorado
- 2003 Inductee, Cable Television Hall of Fame
- 2002 International Bridge Builder Award, Josef Korbel School of International Studies at the University of Denver
- 2001 Chairman’s Award, Cable Television Administration and Marketing Association (CTAM); Stanley B. Thomas Lifetime Achievement Award, National Association of Minorities in Communications (NAMIC); Bridge Builder Asian American Leadership Award, The AURA Fund and aMedia, Inc.; Bill Daniels Business Leader of the Year, The Denver Business Journal
- 1986 Grand Tam Award CTAM
- 1982 Robert H. Beisswenger Memorial Award (Vanguard Associates Award) by the National Cable Television Association (NCTA)
- 1960 RCA David Sarnoff Fellowship
- 1958 Microwave Research Institute Fellow, Polytechnic Institute of Brooklyn
John is committed to bridging the US-China relationship through mutual understanding, dialogue and respect. He is a member of the prominent Committee of 100, a national non-partisan organization composed of outstanding American citizens of Chinese descent. In 2009, John established the SIÉ CHÉOU-KANG Center for International Security and Diplomacy at the University of Denver’s Josef Korbel School of International Studies. John continues to support the Chinese Executive Media Management Program, a mini-MBA curriculum, he helped establish in 2000 at the University of Denver’s Daniels College of Business.
In 2005, John and his wife Anna established the Anna and John J. Sie Foundation. The Anna and John J. Sie Foundation supports the sharing of knowledge amongst peoples and cultures throughout the global community, with an emphasis on Down syndrome, education, media, business, and technology. The Foundation supports Children’s Hospital Colorado, the University of Colorado, the University of Denver, SIÉ CHÉOU-KANG Center for International Security and Diplomacy, Denver School of Science and Technology, Denver Art Museum and numerous other civic, social and educational institutions.
In 2008 and 2009 respectively, the Foundation became the founding donor of the Linda Crnic Institute for Down Syndrome and the Global Down Syndrome Foundation. The Crnic Institute is the first academic home for research and medical care for people with Down syndrome. Its mission is to eradicate the medical and cognitive ill effects associated with the condition.
Mary Beth Wallingford
Mary Beth Wallingford
Managing Director, AJS Ventures, LLC
Board Member, Treasurer, Global Down Syndrome Foundation
Mary Beth Wallingford has been the Managing Director of AJS Ventures, LLC since 2005. AJS Ventures is a private family investment firm. In her role with AJS Ventures she is responsible for the day to day operations, financial supervision, and management of several employees.
Prior to joining AJS Ventures, she was Vice President Controller for Fischer Imaging Corporation, a medical imaging systems manufacturer. Mary Beth started her career as an auditor with Arthur Andersen and Co. and went on to hold key positions in the public accounting, financial services, and the pharmaceutical and medical device industry.
Mary Beth was Chief Financial Officer for Bantek, the largest independent service provider for ATM machines. She served as Vice President and Controller for Geneva Pharmaceuticals, a $338 million unit of the Swiss pharmaceutical and chemical giant Novartis, and was Controller for First Columbia Financial, a $2.7 billion holding company primarily in the savings and loan business. Leading companies financially through rapid growth and change is a hallmark of Mary Beth’s career.
Mary Beth is on the advisory council for the Anna and John J. Sie Foundation and a board member and treasurer of the Global Down Syndrome Foundation. She has attended many Global Down Syndrome Foundation programs and events and is honored to be part of a vision to improve the lives of people with Down syndrome.
Mary Beth graduated from the University of North Dakota with a bachelor’s degree of science in business administration with a major in accounting. She and her husband Steve are the proud parents of a grown child and reside in the Denver area. They enjoy a variety of activities together, including following the Colorado Rockies and High Point University Women’s Lacrosse.
Frank Stephens
Frank Stephens
Global’s 2018 AcceptAbility Ambassador
Frank Stephens is an active spokesman for the Global Down Syndrome Foundation and a member of the Board of Directors of Special Olympics Virginia.
As a member of his local theater group known as Artstream, Frank has acted in various original plays for the last ten years. Frank also had a feature role in the film Touched by Grace, and recently signed with a Hollywood-based talent agency. Frank has also made an occasional guest appearance on the Emmy Award winning A&E reality Show Born This Way.
Frank’s articles have been featured in publications like from the New York Times, London Daily Mail and The Huffington Post. He contributed to Amazon bestseller, Stand Up, which featured stories of outstanding young advocates.
As an advocate, Frank has spoken all over North America and Europe promoting the inclusion of individuals with Intellectual Disabilities. Following a few weeks of multi-media debate with political commentator, Ann Coulter, about the public use of the term “retard”, the Canadian Broadcasting Corporation named him one of its “Most Extraordinary Ordinary People” of 2012. President Obama described him as a man who “writes eloquently about the pain and exclusion when others don’t accept you or treat you with the respect every human being deserves.”
In June 2016, Frank and three other self-advocates met with comedian Gary Owen to discuss a routine that was highly criticized as being abusive to people with intellectual disabilities. Because of their advocacy, Mr. Owen pulled the offensive routine from further viewing.
Frank often speaks on how lucky he feels to live in a generation where all of his accomplishments are possible for a man with Down syndrome.
Michelle Sie Whitten
Michelle Sie Whitten
President & CEO, Co-Founder, Global Down Syndrome Foundation
Michelle Sie Whitten is the Co-Founder, President and CEO of the Global Down Syndrome Foundation (Global). Global is dedicated to significantly improving the lives of people with Down syndrome through Research, Medical Care, Education, and Advocacy. Its primary focus is to support the first academic home in the United States committed to research and medical care for people with Down syndrome made up of key affiliates – the Linda Crnic Institute for Down Syndrome and the Rocky Mountain Alzheimer’s Disease Center, both at the Anschutz Medical Campus, and the Sie Center for Down Syndrome at Children’s Hospital Colorado.
Global publishes the award-winning quarterly magazine – Down Syndrome WorldTM and is a leading national lobbying and advocacy organization for people with Down syndrome. Specifically, Global is the lead voice in requiring a comparable, fair share of federal government support for research, improved medical care, and improved educational standards for people with Down syndrome. Global organizes the award-winning Be Beautiful Be Yourself Fashion Show – the single largest annual fundraiser for Down syndrome, and administers the Quincy Jones Exceptional Advocacy Award each year. Programs established by Whitten, and organized and funded by Global include the Be Beautiful Be Yourself Dance Class, Ed McCaffrey Dare to Play Football and Cheer Camps, Global Down Syndrome Educational Series, the Dare to Play Soccer Camp, Dare to Play Tennis Camp, and more.
Michelle has also served as the Executive Director of the Anna and John J. Sie Foundation since 2005. Since that time, the Anna and John J. Sie Foundation has become the largest private source of grant money for Down syndrome-related research and programs. Michelle was a key architect in establishing the Linda Crnic Institute for Down Syndrome and the Sie Center for Down Syndrome at Children’s Hospital Colorado.
For her Down syndrome-related work, Michelle has received several awards including the 2014 Triumphant Woman Award from the Excelsior Youth Center, the 2013 Colorado Cross Disability Coalition Award, the 2013 National Down Syndrome Congress’ President’s Award, the 2011 inaugural National Football Foundation Community Outreach Award, seventeen ICON awards from 2011 to 2015, the 2010 Rainbow of Hope Award from Keshet of the Rockies, the 2009 Developmental Pathways Frances Owens Family Involvement Award, and the 2007 Arc Thrift Community Leadership Award.
Prior to her career in the non-profit sector, Michelle was President and CEO of Encore International, Inc., then the China division of Liberty Media Corporation. She worked in the cable industry from 1993 until 2005 and is considered a pioneer in the China media industry. For her work during that time, she received the 40 Under 40 Achievement Award, the Real Women: Outstanding Entrepreneur Award and the Women in Cable & Telecommunications Walk of Fame Award.
Michelle sits on the boards of arc Thrift of Colorado, the Linda Crnic Institute for Down Syndrome, Denver Mayor’s International Council, and Constellation Philanthropy. She holds a Master of Arts degree in Regional Studies – East Asia and a Graduate Certificate in Business Administration, both from Harvard University. She studied Mandarin Chinese at Peking University and holds a Bachelor of Arts degree in Asian Studies from Tufts University.
Michelle is married to Tom Whitten, a China and contemporary art expert. They live in Denver, Colorado and have two children, one of whom has Down syndrome.
Mary Beth Wallingford
Mary Beth Wallingford
Managing Director, AJS Ventures, LLC
Board Member, Treasurer, Global Down Syndrome Foundation
Mary Beth Wallingford has been the Managing Director of AJS Ventures, LLC since 2005. AJS Ventures is a private family investment firm. In her role with AJS Ventures she is responsible for the day to day operations, financial supervision, and management of several employees.
Prior to joining AJS Ventures, she was Vice President Controller for Fischer Imaging Corporation, a medical imaging systems manufacturer. Mary Beth started her career as an auditor with Arthur Andersen and Co. and went on to hold key positions in the public accounting, financial services, and the pharmaceutical and medical device industry.
Mary Beth was Chief Financial Officer for Bantek, the largest independent service provider for ATM machines. She served as Vice President and Controller for Geneva Pharmaceuticals, a $338 million unit of the Swiss pharmaceutical and chemical giant Novartis, and was Controller for First Columbia Financial, a $2.7 billion holding company primarily in the savings and loan business. Leading companies financially through rapid growth and change is a hallmark of Mary Beth’s career.
Mary Beth is on the advisory council for the Anna and John J. Sie Foundation and a board member and treasurer of the Global Down Syndrome Foundation. She has attended many Global Down Syndrome Foundation programs and events and is honored to be part of a vision to improve the lives of people with Down syndrome.
Mary Beth graduated from the University of North Dakota with a bachelor’s degree of science in business administration with a major in accounting. She and her husband Steve are the proud parents of a grown child and reside in the Denver area. They enjoy a variety of activities together, including following the Colorado Rockies and High Point University Women’s Lacrosse.
Scientific & Medical Advisory Board
Basic science, including translational science, is a key focus of the Linda Crnic Institute for Down Syndrome. To this end, the Crnic Institute has a Scientific Advisory Board. The Scientific Advisory Board is responsible to assist in creating and implementing the Crnic Institute’s scientific plan aimed at eradicating the medical and cognitive ill affects associated with Down syndrome.
Angelika Amon, PhD
Angelika Amon, PhD
Kathleen and Curtis Marble Professor in Cancer Research, Professor of Biology, The David Koch Institute for Integrative Cancer Research at MIT; Investigator, Howard Hughes Medical Institute
Angelika Amon’s research at MIT aims to obtain a detailed molecular understanding of the regulatory circuits that control chromosome segregation and what happens to cells in which these mechanisms fail and hence become aneuploid.
Tom Blumenthal, PhD
Tom Blumenthal, PhD
Director Emeritus, Linda Crnic Institute for Down Syndrome
Professor, Molecular, Cellular and Developmental Biology, University of Colorado
Tom Blumenthal was born in Santa Monica, California in 1943, but grew up in Elkins Park, Pennsylvania, a suburb of Philadelphia. He majored in Biology at Antioch College in Yellow Springs, Ohio and graduated in 1966. He was an NSF fellow during his graduate work at Johns Hopkins University from which he received his PhD in Genetics in 1970. His thesis was in the area of bacteriophage genetics.
Dr. Blumenthal’s research currently concentrates in the areas of mechanisms of pre-mRNA processing in C. elegans and how that relates to organization of genes on chromosomes. Working in the C. elegans model system, Dr. Blumenthal’s lab discovered the first eukaryotic operons, now known to exist in many other phyla even including primitive chordates. His lab focuses on mechanistic aspects of coordination of multiple kinds of RNA cleavage and splicing events in eukaryotic polycistronic pre-mRNA processing. He has published more than 100 papers and one book in the areas of genetics and molecular biology.
In 2012, Dr. Blumenthal became Executive Director of Linda Crnic Institute for Down Syndrome at the University of Colorado Health Sciences Center at Anschutz Medical Campus. At the Crnic Institute, Dr. Blumenthal leads a “Dream Team” of experts with more than 80 years of combined experience in caring for children with Down syndrome and developmental disabilities including Dr. Huntington Potter who studies the relationship between Alzheimer’s Disease and Down syndrome, and Dr. Katheleen Gardiner, who studies gene expression alterations in Down syndrome. As Executive Director of the LCI, Dr. Blumenthal also manages the Anna and John J. Sie Center for Down Syndrome, including Sie Center clinical director Dr. Fran Hickey, program coordinator Dee Daniels, and senior physical therapist Patricia C. Winders.
Prior to this engagement, Dr. Blumenthal was the Chair of Molecular, Cellular and Developmental Biology at the University of Colorado at Boulder since 2006, where he continues to hold his position as professor of Molecular, Cellular and Developmental Biology, in addition to running his RNA lab at CU Boulder. From 1997 to 2006, Dr. Blumenthal served as the Chairman of the Biochemistry and Molecular Genetics Department at the University of Colorado School of Medicine.
Dr. Blumenthal is currently on the Editorial Boards of the journals RNA, Molecular and Cellular Biology, Transcription, and Worm, and the online book, Wormbook. He has served on the Boards of Directors of the American Medical and Graduate Departments of Biochemistry, the American Society of Biochemistry and Molecular Biology, the RNA Society and the Scientific Advisory Board of Wormbase, the C. elegans database. He also served as a member of the University of California Science and Technology Committee and the Scientific Advisory Boards of the Biological Science Divisions of the Los Alamos and Lawrence Livermore National Laboratories. He was elected to membership in the American Academy of Arts and Sciences in 2010.
Dr. Blumenthal was a Helen Hay Whitney Foundation postdoctoral fellow with James Watson at Harvard, where he showed that bacteriophage QB replicase contains protein synthesis elongation factors. In 1973, he became an Assistant Professor at Indiana University, where he remained until 1996, rising through the ranks to Professor and Chairman of Biological Sciences. In 1980, as a Guggenheim fellow, he did a sabbatical with Sydney Brenner at the MRC in Cambridge, where he began working on the nematode C. elegans. He studied developmental gene regulation and later began his current projects on mechanisms of splicing and chromosomal gene organization. In 1993 he did a sabbatical with Barbara Meyer at Berkeley where he worked on C. elegans 3’ splice site recognition.
Thomas R. Cech, PhD
Thomas R. Cech, PhD
Distinguished Professor, Director Biofrontiers Institute, University of Colorado at Boulder,
Former President of the Howard Hughes Medical Institute
Nobel Laureate Tom Cech has been on the faculty of the University of Colorado Boulder since 1978. In 2000, he was named president of the Howard Hughes Medical Institute and remained in the position until 2009. Currently his lab in Boulder investigates the structure and replication of telomeric DNA. A telomere protects the end of a chromosome from degenerating or fusing with another chromosome.
Says Cech of the Linda Crnic Institute for Down Syndrome, “The entire mission of the Linda Crnic Institute is important, but I am most involved with the research efforts. Further research of the genes expressed on chromosome 21 will lead to better understanding of Down syndrome, and this better understanding will pave the way to intervention to eliminate its ill effects.”
After receiving his PhD at Berkeley, Cech expanded his knowledge of biology with a postdoctoral fellowship in the lab of Mary Lou Pardue at the Massachusetts Institute of Technology. In 1978, Cech and his wife Carol, a fellow Grinnell graduate and biochemist, both joined the faculty of the University of Colorado at Boulder. There, he settled into the work that would eventually overturn conventional wisdom about RNA. Cech shared the 1989 Nobel Prize in Chemistry for his work with RNA. In addition to this award, Cech has won a number of other international awards and prizes, including the Heineken Prize of the Royal Netherlands Academy of Sciences (1988), the Albert Lasker Basic Medical Research Award (1988) and the National Medal of Science (1995). In 1987, Cech was elected to the US National Academy of Sciences and was also awarded a lifetime professorship by the American Cancer Society.
Larry Gold, PhD
Larry Gold, PhD
Chairman, Founder, and CEO of SomaLogic; Founder of NeXstar and Synergen
During his career, Gold has received many citations including the University of Colorado Distinguished Lectureship Award, the National Institutes of Health Merit Award, the Career Development Award, and the Chiron Prize for Biotechnology. In addition, Gold has been a member of the American Academy of Arts and Sciences since 1993 and the National Academy of Sciences since 1995.
SomaLogic is developing reagents that focus on proteins to detect the early onset of diseases quickly, effectively and economically. Dr. Gold received an AB in Biochemistry from Yale University and a PhD in Biochemistry from the University of Connecticut.
Gold is excited about his involvement with the Linda Crnic Institute for Down Syndrome and sees a positive future for Down syndrome research.
“I am so pleased to be part of this endeavor, with such good people,” says Gold. “Years ago I thought that interventions in the cognitive lives of people with Down syndrome was close to impossible, and today, thanks to lots of reading and listening, I believe that positive interventions are a certainty. The Linda Crnic Institute will certainly lead this effort.”
Jeanne Lawrence, PhD
Jeanne Lawrence, PhD
Professor and Interim Chair of the Department of Cell and Developmental Biology at the University of Massachusetts Medical School
Jeanne Lawrence is an internationally recognized leader in the field of epigenetics, chromosome regulation, and non-coding RNAs, whose work reflects her inter-disciplinary background in developmental biology and clinical genetics. She is currently Professor and Interim Chair of the Department of Cell and Developmental Biology at the University of Massachusetts Medical School. After receiving a B.A. in Biology and Music from Stephens College, she earned her M.S. in Human Genetics and Counseling from Rutgers University and a Ph.D. in Developmental Biology from Brown University.
Dr. Lawrence’s work bridges fundamental questions in epi-genome biology with human clinical genetics, as she is interested in translating basic science discovery to problems that impact people, particularly Down Syndrome. In her earlier work, she received awards and patents for the development of single-copy gene and nuclear RNA FISH (fluorescence in situ hybridization) technology, which made possible the investigation of gene and RNA organization directly within cell nuclei. This allowed her lab to first show that RNA from the X-linked XIST gene is expressed exclusively from and “coats” the inactive X-chromosome in female cells, where this novel RNA induces heterochromatin modifications which silence transcription across the chromosome. These studies were key to establishing the precedent that a large “non-coding” RNA (XIST RNA) could function itself as a regulator of chromatin. XIST now remains the preeminent paradigm for ncRNA regulation of the epigenome.
Most recently, her lab has demonstrated that the large XIST gene could be accurately targeted into one extra chromosome 21 in iPS cells from a Down syndrome patient. Most importantly, the RNA effectively silenced expression of genes across the extra chromosome 21. This novel approach now provides several new avenues for translational research into human Down Syndrome cell pathology in vitro, and opens the longer-term possibility of “chromosome therapy” in vivo for aspects of trisomy 21 (and other trisomys). Dr. Lawrence’s lab is currently working to demonstrate feasibility that XIST- mediated silencing of a trisomic chromosome can correct or mitigate pathology in mouse models of DS, and is also the engineered human DS pluripotent stem cells as a correctable “disease-in-a-dish”, to understand cellular differences that underlie various aspects of Down Syndrome.
Dr. Lawrence has been honored for development of highly sensitive FISH technologies now used round the world and has received awards from the National Center for Human Genome Research, American Society of Cell Biology, German Society for Biochemistry, Muscular Dystrophy Association, Charles H. Hood Foundation and the John Merck Fund. She has served on the NIH Advisory Council for Human Genome Research, numerous NIH review panels, and currently serves as as monitoring editor for the Journal of Cell Biology.
Leslie Leinwand, PhD
Leslie Leinwand, PhD
Professor, Chief Scientific Officer, Biofrontiers Institute, University of Colorado at Boulder
Ex-officio Board Member, Global Down Syndrome Foundation
An expert in cardiovascular research, Leinwand is principal investigator of a Howard Hughes Medical Institute Grant and National Institutes of Health Cardiovascular Training Grant. She established and co-directs the University of Colorado’s Cardiovascular Research Institute (CU-CVI), a collaborative group of physicians, molecular biologists and geneticists. The team works to integrate research and clinical applications, as well as initiate effective treatment programs and preventive therapies.
“I believe that the Global Down Syndrome Foundation is poised to make a difference in the lives of people with Down syndrome through its support of basic and clinical research,” Leinwand says. “Research in Down syndrome is under-funded and tools are now available to make fundamental advances in understanding the mechanisms that result in the many challenges faced by people with Down syndrome that should in turn, lead to improvements in their lives. I am committed to these efforts as a scientist and friend to the Down syndrome community.”
Leinwand has authored more than 185 scientific publications and founded a biotechnology company, Myogen, which conducts clinical trials on heart medications. She is the former director of the Colorado Initiative for Molecular Biotechnology and served as the interim director of the Linda Crnic Institute for Down Syndrome. Leinwand received her Bachelor’s degree from Cornell University, her PhD from Yale University and did post-doctoral training at Rockefeller University.
Roger Reeves, PhD
Roger Reeves, PhD
Professor, Department of Physiology Johns Hopkins University School of Medicine
Dr. Roger Reeves is a Professor in the Department of Physiology and a Core Faculty Member of the McKusick-Nathans Institute of Genetic Medicine at the Johns Hopkins University School of Medicine. Lab website, http://inertia.bs.jhmi.edu/
Reeves began working on gene expression in Down syndrome early in his career. Today he is considered one of the foremost experts in this field. Recent work includes human genetic studies to identify genetic modifiers that contribute to a more or less severe presentation of Down syndrome. His laboratory is studying a possible therapeutic approach for Down syndrome features.
Reeves recently demonstrated the basis for the reduced frequency of solid tumors in people with trisomy 21. He directs the Down Syndrome Cognition Project (DSCP), a multi-site effort to employ the Arizona Cognitive Test Battery (ACTB) in conjunction with genetic analysis to identify genetic contributors to variable cognitive ability in people with Down syndrome. The DSCP network and ACTB provide a structure to recruit volunteers and monitor effectiveness of drugs designed to ameliorate cognitive dysfunction specific to people who have trisomy 21.
Reeves earned his BS from Bowling Green State University in Ohio and his PhD at the University of Maryland, doing his thesis research at the National Cancer Institute.
Roger says of the LCI, “Translational research” refers to the application of basic research knowledge to the development of therapies. The former director of NIH, Elias Zerhouni, said of this challenge that ‘It’s hard to translate what we don’t understand.’ The marriage of basic and clinical research is the exciting vision of LCI and it is this approach that will give us the understanding to translate our knowledge into amelioration of features of Down syndrome.”
Affiliate Leadership
Joaquín M. Espinosa, PhD
Joaquín M. Espinosa, PH.D.
Linda Crnic Institute for Down Syndrome Hires Internationally Renowned Cancer Scientist
Global Down Syndrome Foundation Will Help Fund Espinosa’s Vision as the Newly Appointed Associate Director of Science
SEPTEMBER 16, 2015 (Denver, CO) — The Global Down Syndrome Foundation (“Global”) announced today acclaimed cancer medical researcher, professor and scientist Joaquín Espinosa, Ph.D., has been appointed to the newly created position of Associate Director for Science at the Linda Crnic Institute for Down Syndrome at the University of Colorado Denver School of Medicine (UCD-SOM) in the Anschutz Medical Campus.
Tom Blumenthal, Ph.D., Executive Director of the Crnic Institute commented, “There were other departments and centers vying to hire Joaquín but in the end it was the allure and potential of Down syndrome research that convinced him to join us. In this position, he knows he has the chance of helping millions of people. Joaquín is not only a cancer expert he is a brilliant and big idea scientist. He is an expert in the basic molecular biology of gene expression, and an accomplished genomicist. We are lucky to have him.”
Espinosa’s team (The Espinosa Lab) has moved from the University of Colorado Boulder to the Department of Pharmacology at UCD-SOM in Aurora, where Espinosa will hold a full professorship. His team will continue investigating diverse cancer genes, while also focusing on the remarkable fact that the population with Down syndrome has a much lower risk of developing solid tumors.
In his new position overseeing science at the Crnic Institute, Espinosa is tasked with expanding beyond the existing Crnic Grand Challenge Grants program that has stimulated 28 labs and nearly 100 scientists to work on Down syndrome research at the University of Colorado. He will foster growth in key areas such as Alzheimer’s disease, cancer, autoimmune disorders and clinical research in association with the Sie Center for Down Syndrome at Children’s Hospital Colorado. He will also work on establishing public-private-university alliances to stimulate research that benefits people with Down syndrome.
Global Down Syndrome Foundation, the fundraising, education and outreach arm of the Crnic Institute, helped raised funds to enable the recruitment of Espinosa and will make fundraising for his scientific vision a priority.
“The Global Down Syndrome Foundation is proud to have Dr. Joaquín Espinosa join our prestigious group of scientists at the Crnic Institute for Down Syndrome,” said Michelle Sie Whitten, President and CEO of the Global Down Syndrome Foundation. “The combination of his scientific achievements and his passion for helping people with Down syndrome makes Dr. Espinosa a perfect fit for our Global family.”
“I am very excited to join the Crnic Institute and work in collaboration with the teams at the Sie Center and Global Down Syndrome Foundation,” said Espinosa. “It is rare to find this perfect combination of a research institute, a clinical care operation and a powerful non-profit agency working in close coordination toward a common goal. I am confident that we will advance biomedical research in the area of Down syndrome and the associated co-morbidities in major ways.”
Previously Espinosa held the position of Associate Professor of Molecular, Cellular and Developmental Biology at the University of Colorado Boulder, where he will continue as a Visiting Associate Professor. He will also continue as the University of Colorado’s Director of The Functional Genomics Facility and as the Co-Leader of the Molecular Oncology Program at the University of Colorado Cancer Center.
Espinosa obtained his Ph.D. from the University of Buenos Aires in Argentina and did post-doctoral training at The Salk Institute for Biological Studies in La Jolla, California. In 2009, he was appointed as an Early Career Scientist of the Howard Hughes Medical Institute, a nonprofit medical research organization that plays a powerful role in advancing biomedical research and science education in the United States.
In addition to being an advocate for people with Down syndrome, Espinosa is also a contributor to The Huffington Post, an avid rock climber, skier and outdoorsman.
Huntington Potter, PhD
Huntington Potter, PhD
Director of Alzheimer’s Disease Programs at the Linda Crnic Institute for Down Syndrome; Director of Rocky Mountain Alzheimer’s Disease Center; Professor and Vice Chair of Basic Research
Dr. Huntington Potter is Professor of Neurology and Director of Alzheimer’s Disease Research in the Department of Neurology and the Linda Crnic Center for Down Syndrome at the University of Colorado, Denver. He discovered and is devoted to studying the mechanistic relationship between Alzheimer’s Disease and Down syndrome. Recognizing that these disorders are two sides of the same coin and studying them together will best hasten the development of new treatments for both. Read more about Dr. Huntington Potter’s groundbreaking research.
Prior to joining UC Denver, Dr. Potter studied, researched and taught for 30 years at Harvard University. He received his AB Cum Laude in Physics and Chemistry and his MA and PhD in Biochemistry and Molecular Biology before spending 13 years on the faculty of the Neurobiology Department. In 1998, he joined the Faculty at the University of South Florida as the Eric Pfeiffer Chair for Research on Alzheimer’s Disease. He designed and directed the NIA-designated Florida Alzheimer’s Disease Research Center at USF and was elected President of the Faculty at the College of Medicine, and President of the USF Tampa Faculty Senate. From 2004-2008, he was CEO and Scientific Director of the Johnnie B. Byrd Sr. Alzheimer’s Center & Research Institute, during which time the Institute built the largest free-standing Alzheimer’s disease research institute in the world and developed 7 new treatments for Alzheimer’s disease in preparation for human trials, before joining USF.
Dr. Potter is credited with the first demonstration of the Holliday intermediate in genetic recombination, the perfection of electroporation for gene transfer, and the discovery of the essential role of inflammation and the amyloid-promoting activity of the apoE-4 protein in Alzheimer’s disease. He also discovered that Alzheimer’s disease and Down syndrome, which invariably leads to Alzheimer’s by age 30-40, are mechanistically related to each other and to cancer through the development of cells with abnormal numbers of chromosomes, which will be the focus of his research at UC Denver. He is author of over 100 scientific articles and books, is the holder of 15 U.S. and foreign patents, has sat on scientific advisory and review committees in academia, industry and government, and has received numerous awards for his work. In 2010, Dr. Potter was elected a Fellow of the American Association for the Advancement of Science. His electron micrographs of DNA are on permanent exhibit in the National American History Museum of the Smithsonian Institute in Washington D.C.
Francis J. Hickey, MD
Francis J. Hickey, MD
Medical Director, Anna and John J. Sie Center for Down Syndrome, Children’s Hospital Colorado and Linda Crnic Institute for Down Syndrome, Department of Pediatrics, University of Colorado School of Medicine
Dr. Francis J. Hickey joined the Linda Crnic Institute for Down Syndrome as Medical Director of its Anna and John J. Sie Center for Down Syndrome in 2010. Since that time, Dr. Hickey has put together a multi-disciplinary team of experts with more than 80 years of combined experience in caring for children with Down syndrome and developmental disabilities. The Sie Center for Down Syndrome has evaluated nearly 1000 individuals with Down Syndrome from across the country and internationally the past 4 years.
Dr. Hickey was attracted to his position as director of the Sie Center because it allows him to organize the best medical and therapeutic intervention available for children with Down syndrome. Dr. Hickey and his team have developed relationships with over 15 subspecialists in pediatrics who have an interest in caring for children with Down syndrome and maximizing their potential. Simultaneously, Dr. Hickey oversees clinical research that will significantly impact evidenced-based healthcare guidelines for this often overlooked population. The Sie Center is based at the Children’s Hospital Colorado (ranked among the top 10 in the nation by News & World Report 2014).
Previously, Dr. Hickey served for 21 years as an adjunct Assistant Professor of Pediatrics at the University Of Cincinnati College Of Medicine. During that time, he was a key architect of, and support to, the Jane and Richard Thomas Center for Down Syndrome at the Cincinnati Children’s Hospital.
Dr. Hickey has directed a number of research projects related to development in individuals with Down syndrome and with the additional diagnosis of autism. He has authored or co-authored numerous articles and abstracts in scholarly publications on the topic. He has a keen interest in furthering many areas of research for children with Down syndrome including sleep apnea, auto immune disorders, language, and behavioral challenges.
Recognized as one of “America’s Top Doctors” for ten years, Dr. Hickey has received numerous awards including the Maxwell J. Schleifer Distinguished Service Award from Exceptional Parenting Magazine, Professional of the Year award and Lifetime Achievement Award from the Down Syndrome Association of Greater Cincinnati, The Ross Award for Excellence in Ambulatory Pediatrics, and the Senior Resident Teaching Award in Pediatrics.
Dr. Hickey earned his undergraduate degree from Harvard University and his medical degree from the University Of Cincinnati College Of Medicine. He completed his pediatric residency at Cincinnati Children’s Hospital Medical Center and a fellowship in Developmental Pediatrics at Boston Children’s Hospital.
Dr. Hickey and his wife, Kris, are the parents of four children, one of whom has the dual diagnosis of Down syndrome and autism.
Barry Martin, MD
Barry Martin, MD
Family Physician & Assistant Professor of General Internal Medicine, University of Colorado School of Medicine
Barry Martin, MD, is Board Certified in Family Medicine. He has more than 25 years’ experience providing primary health care for adults with developmental disabilities including several hundred with Down syndrome. He served as Medical Director of the former Denver Adult Down Syndrome Clinic for 10 years. Currently, Dr. Martin is an Assistant Professor of General Internal Medicine at University of Colorado School of Medicine where he sees patients for primary care and for consultations. He is also the lead physician for the Adult Down Syndrome Clinic at Denver Health. Dr. Martin is a member of the National Down Syndrome Congress and the Down Syndrome Medical Interest Group.
International Spokespeople
In addition to Global Down Syndrome Foundation Ambassadors who happen to have Down syndrome, the Foundation enlists the help of International Spokespeople – celebrities who are personally vested in improving the lives of people with Down syndrome. Using their status to advocate for research and medical care they help educate governments, educational organizations and society in order to affect legislative and social changes. The Foundation’s International Spokespeople strongly believe every person on this planet has something to offer and every person with Down syndrome should have the opportunity to fulfill his or her potential and to live an equitable and satisfying life.
Jamie Foxx
Jamie Foxx
Actor, Singer, Comedian, Producer
Jamie Foxx won Global’s Quincy Jones Exceptional Advocacy Award in 2012. Jamie describes his sister, DeOndra Dixon, who happens to have Down syndrome as his life’s inspiration. Foxx often described as a triple threat for his versatility as an actor, musician and comedian. He won an Academy Award for his portrayal of the legendary Ray Charles as well as the Golden Globe, Screen Actors Guild, BAFTA and NAACP Image Awards. Foxx simultaneously garnered Oscar, Golden Globe, SAG Award, BAFTA Award, and Image Award nominations for his work in “Collateral.” And he landed Golden Globe and SAG Award nominations and won an Image Award for the television movie “Redemption.”
Mikaela Hoover
Mikaela Hoover
Actress, Model, Social Media Influencer
Mikaela Hoover is an actress, model, and social media influencer. She has a substantial social media following, with almost one million followers on Instagram. Hoover is best known for her roles in various superhero films. Hoover represents various brands as an Instagram model and collaborates with other social media influencers. She frequently works with Youtube star Rudy Mancuso and social media influencer Brittany Furlan. Growing up, Mikaela was very close with her cousin Bobby who had Down syndrome. Her relationship with Bobby inspired her to get involved in philanthropic work and empower others with Down syndrome.
John C. McGinley
John C. McGinley
Actor
John C. McGinley has amassed decades of stellar work on stage and screen, including seven collaborations with Oscar-winning filmmaker Oliver Stone. His most significant role is Dad to Max, was born with Down syndrome. After Max’s birth he pursued a role on the TV show “Scrubs” that allowed him to spend more time at home. John was recognized as “Parent of the Year” by ivillage.com, and he has joined the Special Olympics campaign “Spread the Word to End the Word.” In 2011 John received Global’s Quincy Jones Exceptional Advocacy Award. He also serves on Global’s Board of Directors. His most recent role is in the horror-comedy “Stan Against Evil.”
Beverly Johnson
Beverly Johnson
Model, Actress, Entrepreneur
As the first African-American woman to grace the cover of Vogue magazine in 1974, Beverly Johnson is used to breaking down barriers. The model, mother, actress and entrepreneur now has one more title to add to her impressive resume: International Spokesperson for the Global Down Syndrome Foundation. Beverly’s remarkable three-decade career began when she took the modeling world by storm in the ‘70s,transcending race and appearing on more than 500 magazine covers and thousands of editorial pages through the 1990s. But Beverly didn’t limit herself to print – she also worked the runway for Yves St. Laurent, Valentino, Calvin Klein and Halston. Ever the over-achiever, Beverly also appeared in feature films and television programs, including her new reality show Beverly’s Full House, now airing on OWN.
Quincy Jones
Quincy Jones
Record Producer, Songwriter, Composer, Arranger, Film & Television Producer
A Golden Touch—A Golden Heart. Reading the biographies of icon Quincy Jones— musician, composer, producer, arranger, conductor—it would seem that everything Quincy Jones touches turns into gold (or at least platinum). Named by Time Magazine as one of the most influential jazz musicians of the 20th century, Quincy has received 25 Grammy Awards and was nominated 79 times (the all-time most nominated Grammy artist). For three famously productive years he was Frank Sinatra’s conductor and arranger producing, amongst others, the arrangement Fly Me to The Moon —the first music played on the moon in 1969 by astronaut Buzz Aldrin.
Kyra Phillips
Kyra Phillips
Award-winning Journalist
Kyra Phillips is the award-winning journalist who anchors “Raising America with Kyra Phillips” on HLN. This daytime interactive broadcast focuses on news stories told through a parental lens and how they impact the modern American family. Phillips joined CNN in 1999, moved to HLN in August 2012 and led the network’s 2012 election coverage. She is based at the network’s world headquarters in Atlanta. Phillips was awarded Global’s Quincy Jones Exceptional Advocacy Award in 2013.