Organizations Filed Purposes:
THE NATIONAL FRAGILE X FOUNDATION UNITES THE FRAGILE X COMMUNITY TO ENRICH LIVES THROUGH EDUCATIONAL AND EMOTIONAL SUPPORT, PROMOTES PUBLIC AND PROFESSIONAL AWARENESS, AND ADVANCES RESEARCH TOWARD IMPROVED TREATMENTS AND A CURE FOR FRAGILE X.
TO PROVIDE UNWAVERING SUPPORT FOR EVERY FAMILY AFFECTED BY FRAGILE X WHILE RELENTLESSLY PURSUING A CURE.
EDUCATION AND SUPPORT - THE NFXF PROVIDES PERSONALIZED SUPPORT, INFORMATION AND REFERRALS TO INDIVIDUALS AND FAMILIES ON THE MULTITUDE OF ISSUES THEY FACE, INCLUDING DIAGNOSIS, GENETICS, BEHAVIOR, TREATMENTS, EDUCATIONAL PLANNING, EMPLOYMENT AND ADULT ISSUES. THE NFXF ORGANIZES REGIONAL, INTERNATIONAL EDUCATIONAL CONFERENCES AND WEBINARS FOR FAMILIES AND PROFESSIONALS ABOUT FX DISORDERS TO HELP FAMILIES COPE AND OVERCOME THE DAILY CHALLENGES OF LIVING WITH FX.
RESEARCH GRANTS - THE NFXF FUNDS TWO MAJOR RESEARCH STRATEGIES. THE NFXF BIOBANK, WHEREBY BIOLOGICAL SAMPLES ARE COLLECTED FROM VOLUNTEER PARTICIPANTS LIVING WITH FRAGILE X. THESE SAMPLES, COMBINED WITH CLINICAL DATA FROM THESE SAME PARTICIPANTS WILL BE USED TO CREATE UNIQUE NFXF RESEARCH READY MATERIALS. RESEARCHERS CAN THEN USE THESE MATERIALS TO IDENTIFY CORRELATIONS BETWEEN BEHAVIOR AND MEDICAL CONDITIONS, KNOWN AS BIOMARKERS, ALLOWING PHARMACEUTICALS TO TARGET THE UNDERLYING BIOLOGICAL MECHANISM FOR TREATMENT OR CURES. THE NFXF ALSO FUNDS SUMMER STUDENT FELLOWSHIPS TO PROMOTE THE DEVELOPMENT OF YOUNGER SCIENTISTS IN THE FIELD.
COMMUNITY SUPPORT NETWORK - THE NFXF ORGANIZES AND SUPPORTS A VIBRANT AND DEDICATED NETWORK OF VOLUNTEER-LED CHAPTERS ACROSS THE U.S. THESE CHAPTERS DELIVER THE NFXF MISSION ON A LOCAL LEVEL. A WRITTEN CHAPTER AGREEMENT WAS DEVELOPED TO FORMALIZE AFFILIATE VOLUNTEER GROUPS AS NFXF CHAPTERS EFFECTIVE JANUARY 2018.
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 |
|---|
| Linda Sorensen | EXECUTIVE DIRECTOR | 40 | $171,100 |
| Laurie Bridges | DIRECTOR | 1 | $0 |
| Reymundo Lozano | DIRECTOR | 1 | $0 |
| Jay Souder | PAST PRESIDENT | 1 | $0 |
| Stephanie Sherman | DIRECTOR | 1 | $0 |
| Rajat Sarup | TREASURER | 2 | $0 |
| Howard Pollock | DIRECTOR | 1 | $0 |
| Charles Mitchell | DIRECTOR | 1 | $0 |
| Emily Mack | PRESIDENT | 2 | $0 |
| Larry Krantz | DIRECTOR | 1 | $0 |
| Joe Garera | DIRECTOR | 1 | $0 |
| Abby Gaunt | DIRECTOR | 1 | $0 |
| Brenda Finucane | DIRECTOR | 1 | $0 |
| Paula Fasciano | DIRECTOR | 1 | $0 |
| Evan Davis | VICE PRESIDENT | 2 | $0 |
| Emily Borg | SECRETARY | 2 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202121239349301887_public.xml