GLOBAL DOWN SYNDROME FOUNDATION

RESEARCH AND CLINICAL CARE: DOWN SYNDROME IS WHEN A PERSON IS BORN WITH THREE COPIES OF CHROMOSOME 21 INSTEAD OF THE USUAL TWO. BEFORE GLOBAL WAS ESTABLISHED, DOWN SYNDROME WAS THE LEAST FUNDED GENETIC CONDITION BY THE NATIONAL INSTITUTES OF HEALTH (NIH) AND VERY LITTLE WAS BEING DONE TO INCREASE RESEARCH OR CREATE EVIDENCE-BASED MEDICAL CARE GUIDELINES. -GLOBAL ESTABLISHED THE FIRST DOWN SYNDROME RESEARCH AND MEDICAL CARE INSTITUTE IN OUR COUNTRY - OUR AFFILIATE, THE CRNIC INSTITUTE FOR DOWN SYNDROME. -GLOBAL ESTABLISHED ONE OF THE LARGEST DOWN SYNDROME MEDICAL CENTERS IN THE WORLD SERVING 2,500+ CHILDREN WITH DOWN SYNDROME FROM 35 STATES AND 11 COUNTRYS - OUR AFFILIATE THE SIE CENTER FOR DOWN SYNDROME. -GLOBAL SUCCESSFULLY LOBBIED AND ADVOCATED FOR THE ESTABLISHMENT OF THE TRANS-NIH DOWN SYNDROME RESEARCH PROGRAM CALLED "INCLUDE- AND HAVE LED TO THE RENAISSANCE OF DOWN SYNDROME RESEARCH TODAY. -GLOBAL SUCCESSFULLY LOBBIED AND ADVOCATED FOR THE NATIONAL INSTITUTES OF AGING TO LAUNCH THEIR LONGITUDINAL AD-DS BIOMARKER GRANTS. -GLOBAL CREATED THE FIRST EVIDENCED-BASED GLOBAL MEDICAL CARE GUIDELINES FOR ADULTS WITH DOWN SYNDROME PUBLISHED IN THE JOURNAL OF AMERICAN MEDICAL JOURNAL (JAMA) -GLOBAL ESTABLISHED THE BE BEAUTIFUL BE YOURSELF FASHION SHOW, THE WORLD'S LARGEST FUNDRAISER BENEFITTING PEOPLE WITH DOWN SYNDROME AND THE ACCEPTABILITY GALA, THE FIRST DOWN SYNDROME RESEARCH FUNDRAISER IN WASHINGTON DC, -GLOBAL ORGANIZED THE: FIRST DOWN SYNDROME RESEARCH SUMMIT IN THE US IN 2006 HEADED BY NOBEL LAUREATE TOM CECH FIRST DOWN SYNDROME RESEARCH CONFERENCE AT NIH IN 2010 FOCUSED ON DATABASES, BIOBANKS & REGISTRIES WHICH RESULTED IN NIH CREATING THE DSCONNECTS DOWN SYNDROME REGISTRY FIRST DOWN SYNDROME & ALZHEIMER'S DISEASE WORKSHOP IN COLLABORATION WITH THE ALZHEIMER'S ASSOCIATION AND NIA IN 2012 FIRST DOWN SYNDROME & ALZHEIMER'S DISEASE RESEARCH GRANTS CO-FUNDED BY GLOBAL AND THE ALZHEIMER'S ASSOCIATION. GLOBAL IS DELIVERING ON OUR MISSION THROUGH GROUNDBREAKING RESEARCH WITH OUR AFFILIATES. FOR EXAMPLE WE HAVE: - DISCOVERED THAT DOWN SYNDROME IS AN IMMUNE SYSTEM DISORDER AND WE HAVE CONDUCTED TWO CLINICAL TRIALS TESTING DRUGS THAT NORMALIZE THE IMMUNE SYSTEM AND HAVE HAD PROFOUND RESULTS; WE ARE CURRENTLY ORGANIZING A 3RD SUCH CLINICAL TRIAL - HOLD AN NIH INCLUDE CLINICAL TRIAL GRANT AIMED AT EFFECTIVELY TREATING DOWN SYNDROME REGRESSION DISORDER - DISCOVERED THAT PEOPLE WITH DOWN SYNDROME ARE HYPOXIC - DISCOVERED THREE DISTINCT PHENOTYPES IN DOWN SYNDROME THAT COULD LEAD TO MORE EFFECTIVE "PRECISION MEDICINE" - SUPPORTED THE FIRST CLINICAL TRIALS TESTING PROMISING ALZHEIMER'S DRUGS IN PEOPLE WITH DOWN SYNDROME - PUBLISHED "THE" BEHAVIORAL GUIDELINES FOR CHILDREN WITH DOWN SYNDROME - CREATED A RUBRIC FOR TEST CHILDREN WITH DOWN SYNDROME FOR DYSPHAGIA - PUBLISHED GROUNDBREAKING NATURAL HISTORY STUDIES IN INFANTILE SPASMS, PHYSICAL THERAPY, NEUROLOGY AND MORE.