Organizations Filed Purposes:
Founded and launched the 4H Leukodystrophy Collaboration Network (4HLCN), a global, cross-functional collaboration of patients, families, researchers, and clinicians dedicated to advancing therapeutic discovery that will enable people affected by 4H (POLR3-Related) Leukodystrophy to live longer, better lives.
Founded and launched the 4H Leukodystrophy Collaboration Network (4HLCN), a global, cross-functional collaboration of patients, families, researchers, and clinicians dedicated to advancing therapeutic discovery that will enable people affected by 4H (POLR3-Related) Leukodystrophy to live longer, better lives. In 2020, the 4HLCN held its inaugural scientific working meeting in November 2020, at which a number of recognized 4H Leukodystrophy experts and key opinion leaders in therapeutic modalities with potential application to 4H presented their work and set near- and medium-term research priorities. Following the meeting, the Yaya Foundation released Research Roadmap 1.0 summarizing its research priorities for the 4HLCN.
Launched #4HLFamilies, comprised of programming and supportive resources for families affected by 4H Leukodystrophy. #4HLFamilies aims to connect affected families so that they can share experiences and best practices and provide emotional and educational support for one another, provide educational resources for families and their healthcare providers in order to streamline and improve the standard of care for patients affected by 4H Leukodystrophy, and to share patient stories to raise awareness of the disease. In 2020, the Yaya Foundation held several videoconferences attended by families and children affected by 4H and began creation of a suite of educational resources for newly diagnosed families and their healthcare providers aimed at streamlining and improving their care.
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 |
|---|
| Valerie Gregor | RESEARCH DIRECT | 15 | $62,475 |
| Christina Butterworth | FOUNDATION DIR | 15 | $20,621 |
| Debbie Triptow | Director | 2 | $0 |
| Kurt Triptow | Director | 2 | $0 |
| Rachel Schonbachler | Director | 2 | $0 |
| Soloman Lieberman | Director | 2 | $0 |
| Daniel Grossman | Director | 2 | $0 |
| Ron Garber | Secretary | 15 | $0 |
| Marcia Cleary | Director | 5 | $0 |
| Chris Cleary | Director | 2 | $0 |
| Zhu Cheng | VICE CHAIR | 2 | $0 |
| Gabriel Basin | CFO & DIRECTOR | 7 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202121189349300712_public.xml