Organizations Filed Purposes:
ANGELMAN SYNDROME (AS) IS A NEURODEVELOPMENTAL DISORDER CHARACTERIZED BY GLOBAL DEVELOPMENT DELAYS AND SEVERE SPEECH IMPAIRMENT. A FEW INDIVIDUALS WITH AS DEVELOP FUNCTIONAL SPEECH, BUT MOST COMMUNICATE THROUGH A MIXTURE OF GESTURES, EYE GAZE, ADAPTED SIGN LANGUAGE AND AUGUMENTATIVE COMMUNICATION DEVICES. INDIVIDUALS WITH AS HAVE DEVELOPMENT DELAY AND INTELLECTUAL DISABILITIES. CURRENT RESEARCH SUGGESTS THAT NEURONAL DEVELOPMENT OCCURS CORRECTLY IN AS, BUT NEURONAL FUNCTIONING IS IMPAIRED. THIS NEURONAL IMPAIRMENT IMPACTS THE INDIVIDUAL'S ABILITY TO LEARN IN THAT SKILLS ARE ACQUIRED LESS RAPIDLY THAN IN AGE-MATCHED PEERS. THE FOUNDATION FOR ANGELMAN SYNDROME THERAPEUTICS IS AN ORGANIZATION OF FAMILIES AND PROFESSIONALS DEDICATED TO FINDING A CURE FOR AS AND RELATED DISORDERS THROUGH THE FUNDING OF AN AGRESSIVE RESEARCH AGENDA, EDUCATION, ADVOCACY, AND COMMUNITY SUPPORT. FAST IS COMMITTED TO ASSISTING INDIVIDUALS LIVING WITH AS TO REALIZE THEIR FULL POTENTIAL AND QUALITY OF LIFE.
THE FOUNDATION FOR ANGELMAN SYNDROME THERAPEUTICS (FAST) IS DEDICATED TO FINDING A CURE FOR ANGELMAN SYNDROME (AS) AND RELATED DISORDERS THROUGH THE FUNDING OF AN AGRESSIVE RESEARCH AGENDA, EDUCATION, AWARENESS, AND ADVOCACY.
FAST'S PRIMARY GOAL IS TO ADVANCE RESEARCH LEADING TO A CURE FOR AS IN THE FORM OF PROVIDING GRANTS TO UNIVERSITIES TO PERFORM RESEARCH AND TESTING.
AS IS A RARE DISORDER. THE COMMUNITY OF PARENTS AND CAREGIVERS OF INDIVIDUALS WITH AS RELY HEAVILY ON SOCIAL NETWORKING TO BECOME INFORMED AND SEEK ADVICE AND GUIDANCE ON THE CHALLENGES WHICH THE DISORDER PRESENTS. IT IS ONE OF FAST'S OBJECTIVES TO EDUCATE, SUPPORT, AND STRENGTHEN THIS COMMUNITY. IN DECEMBER 2019, FAST BROUGHT TOGETHER 1,158 PARENTS/CAREGIVERS TO HEAR ABOUT THE LATEST RESEARCH ON AS, THE GOALS AND OBJECTIVES OF FAST, ITS PROGRESS TOWARDS MEETING THOSE GOALS AND PLANS FOR THE FUTURE. SPEAKERS INCLUDED DR. JIM WILSON (UNIVERSITY OF PENNSYLVANIA), JOHN CROWLEY (AMICUS THERAPEUTICS), DR. AMIT RAKHIT (OVID THERAPEUTICS), DR. EDWIN WEEBER (PTC THERAPEUTICS), DR. JOSEPH ANDERSON (UNIVERSITY OF CALIFORNIA - DAVIS), DR. MICHELLE KRISHNAN (ROCHE PHARMACEUTICALS), DR. FRANK BENNETT (IONIS PHARMACEUTICALS), DR. DUIS (VANDERBILT UNIVERSITY), LARRY GLASS (NEUREN PHARMACEUTICALS), DR. SCOTT STROMATT (GENETX THERAPEUTICS), AND KEYNOTE SPEAKER DR. EMIL KAKKIS (ULTRAGENYX PHARMACEUTICAL) AS WELL AS DR. ALLYSON BERENT, FAST'S CHIEF SCIENCE OFFICER. NON-SCIENTIFIC GUEST SPEAKERS INCLUDED COLIN FARRELL, JAI COURTNEY, RETTA SIRLEAF, EVANGELINE LILLY, AND PAULA EVANS. IN ADDITION, AN EDUCATIONAL SUMMIT WAS HELD WITH GUEST EDUCATIONAL EXPERTS INCLUDING LARA BEAUCHAMP, CAROLYN WOEBER, ERIN DOLAN, BARBARA CANNON, AMY EAPEN, KELLY BEINS, AND CAROLINE MUSSELWHITE. NETWORKING/MENTORING OPPORTUNITIES WERE ALSO FACILITATED SO THAT PEOPLE CARING FOR INDIVIDUALS OF THE SAME AGE OR WITH SIMILAR CIRCUMSTANCES COULD EXCHANGE EXPERIENCES, INFORMATION AND GUIDANCE AND SOLIDIFY RELATIONSHIPS.
Executives Listed on Filing
Total Salary includes financial earnings, benefits, and all related organization earnings listed on tax filing
| Name | Title | Hours Per Week | Total Salary |
|---|
| Debbie Guagliardo | FORMER OFFICER AND DIRECTOR | 0 | $0 |
| David Gurzick | DIRECTOR | 7.5 | $0 |
| Chloe Knouff | DIRECTOR | 22.5 | $0 |
| Ben O'Connor | DIRECTOR | 5 | $0 |
| Kelly David | DIRECTOR | 20 | $0 |
| Roy Azout | DIRECTOR | 5 | $0 |
| John Schuellter | DIRECTOR | 10 | $0 |
| Allyson Berent | CHIEF SCIENCE OFFICER | 20 | $0 |
| Sam Maydew | DIRECTOR | 5 | $0 |
| Bryan Thompson | DIRECTOR | 5 | $0 |
| Sharon Weil-Chalker | SCIENCE OFFICER | 5 | $0 |
| Kristy Dixon | SECRETARY | 5 | $0 |
| Kena Richert | CHIEF FINANCIAL OFFICER/TREASURER | 30 | $0 |
| Sharon Claridge | FORMER SECRETARY | 5 | $0 |
| Maiddy Dunigan | VICE CHAIRPERSON | 30 | $0 |
| Paula Evans | CHAIRPERSON | 20 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202032689349300523_public.xml