Organizations Filed Purposes:
The LAM Foundation urgently seeks safe and effective treatments and ultimately a cure for LAM.
Research Costs - The Foundation hosted the annual grant study section in Phoenix, Arizona; during these 1.5 days the committee reviewed and approved grant distributions for the year. At this meeting, the Foundation approved funding to support 6 researchers studying LAM. The Foundation also distributed $34,457 in funds to assist patients with their travel for MILED clinical trial research. The Foundation also distributed $7,751 to patients to assist with their first-time travel to the National Insitutes of Health.
Patient Services - The Foundation co-sponsored 5 regional meetings with the TS Alliance. The Foundation sponsored 23 LAM Regional Educational Meetings in partnership with 15 LAM Clinics, educating more than 700 attendees across the country. The Foundation also produced "Journeys", a publication which provides updates on clinical research and how to live with LAM. The Foundation registered 199 new patients in 2019. We supported the Circle of Hope Transplant Support Program which provided support to 19 participants, 3 of whom received transplants in 2019 and successfully facilitated the procurement of 16 tissue samples that were shipped to LAM investigators.
Clinical - The Foundation supported its 64-member global LAM Clinic and Research Network via two hosted webinars and an in-peron SAB and Clinic Director meeting at the American Thoracic Society Annual Meeting in Dallas, TX in May. The Foundation supported LAM Clinic site participation in the MIDAS trial via coordination of the clinical site agreements and payments.
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 |
|---|
| Susan Sherman | CEO | 40 | $179,714 |
| Jenny Jostworth | Treasurer | 1 | $0 |
| Patti Bebien-Aronoff | Secretary | 1 | $0 |
| Chuck Young | Trustee | 1 | $0 |
| Jilly Evans | Trustee | 1 | $0 |
| Lisa Henske | Trustee | 1 | $0 |
| Frank Mccormack | Scientific Dir. | 1 | $0 |
| Christina Hamilton | Chairman | 1 | $0 |
| Stephanie Nemser-Dreyer | Trustee | 1 | $0 |
| Stephen Ruoss | Trustee | 1 | $0 |
| Dan Dilling | Trustee | 1 | $0 |
| Teri Dungan | Trustee | 1 | $0 |
| Vera Krymskaya | Trustee | 1 | $0 |
Data for this page was sourced from XML published by IRS (
public 990 form dataset) from:
https://s3.amazonaws.com/irs-form-990/202022109349300402_public.xml