Organizations Filed Purposes:
THE SNOW FOUNDATION IS A COLLECTIVE VOICE FOR WOLFRAM SYNDROME PATIENTS, WORKING TOWARDS A CURE FOR WOLFRAM SYNDROME AND DEVELOPING NOVEL THERAPIES FOR DIABETES, VISION LOSS, HEARING LOSS AND NEURODEGENERATION.
PROVIDE FINANCIAL SUPPORT FOR WOLFRAM SYNDROME RESEARCH.
THE SNOW FOUNDATION FOCUSES EFFORTS ON THREE PILLARS: RESEARCH, PATIENTS, AND MOBILIZATION OF THE WOLFRAM SYNDROME (WS) COMMUNITY. IN 2020, THE SNOW FOUNDATION CONTINUED EFFORTS IN RESEARCH AND FUNDING - SEEKING OUT THE BEST POSSIBLE WORLDWIDE RESEARCH WITH THE POWER TO MOVE THE NEEDLE ON DRUG THERAPIES FOR WS PATIENTS. PATIENTS WERE THE MAJOR FOCUS OF FOUNDATION EFFORTS IN 2020 WITH THE CREATION OF THE WS GLOBAL PATIENT REGISTRY. THE REGISTRY PROVIDES PATIENTS WITH OWNERSHIP OF THE INFORMATION THEY NEED TO MAKE THE BEST MEDICAL DECISIONS FOR THEIR PERSONAL AND UNIQUE CIRCUMSTANCES. THE REGISTRY BEGAN IN 2020, AND IS EXPECTED TO LAUNCH IN 2021, IN TIME FOR THE CELEBRATION OF THE FOUNDATION'S 10 YEAR ANNIVERSARY...(SEE SCH. O)THROUGH THE REGISTRY, ALL PATIENTS RECEIVE IMMEDIATE ACCESS TO THE SAME INFORMATION AS IT BECOMES AVAILABLE. NEW DATA AND RESEARCH RESULTS ARE NO LONGER LOCKED AWAY IN INSTITUTIONS AWAITING DISSEMINATION TO THOSE DEEMED NECESSARY. THROUGH THE REGISTRY, PATIENTS HAVE THE POWER TO DRIVE THEIR OWN HEALTHCARE EDUCATION AND DECISIONS. THEY WILL HEAR ABOUT NEW DRUGS AND TECHNIQUES WITHOUT HAVING TO RELY ON INSTITUTIONS TO SHARE THE KNOWLEDGE. THE ADDED BENEFIT OF THE REGISTRY IS THAT IT ACTS AS AN AUTOMATIC FACILITATOR TO CONTINUED MOBILIZATION OF THE WS COMMUNITY - PROVIDING GREATER OPPORTUNITIES FOR COLLABORATION AND PATIENT INTERACTION!AS DESCRIBED ABOVE, THE SNOW FOUNDATION HAS QUICKLY BECOME THE LARGEST INDEPENDENT SUPPORTER OF WS RESEARCH IN THE WORLD AND PLAYS A CENTRAL ROLE IN ADVANCING INTERNATIONAL COLLABORATIVE RESEARCH AND TREATMENT EFFORTS. WOLFRAM SYNDROME IS A DEVASTATING FORM OF DIABETES THAT LEADS TO THE DEGRADATION OF NERVE CELLS IN THE EYES, EARS, AND BRAIN. IN 60% OF CASES, PATIENTS WITH WS DIE BEFORE THEIR 40TH BIRTHDAY.
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 |
|---|
| Stephanie Gebel | CHAIRMAN/CEO | 40 | $12,708 |
| Pat Gibilisco | PATIENT ADVOCACY LIAISON | 5 | $0 |
| Jt Snow | DIRECTOR OF COMMUNICATIONS | 2 | $0 |
| Saad Naseer | DIRECTOR/MEDICAL ADVISOR | 8 | $0 |
| Tod Stephens | SECRETARY | 1 | $0 |
| Robert Haggerty | TREASURER | 2 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202111109349300241_public.xml