The LAM Foundation 2019 Achievements
With the generous support of donors, volunteers, and the broader LAM community, The LAM Foundation continues to pursue new milestones in LAM research, patient support, and access to expert care. The collective efforts of scientists, clinicians, and patients through Foundation programs provide a source of hope for individuals affected by this rare and devastating disease. In 2019, we strategically built upon proven methods of progress while also innovating to maximize new technologies and opportunities. Highlights from 2019 include:
- Patient Support:
- We welcomed 202 new patients to The LAM Foundation, representing a 20% increase since last year.
- Robust outreach efforts through social media, Currents, Journeys, Worldwide LAM Awareness Month, and five LIVE webinars, delivered education and awareness worldwide.
- The LAM Liaison Volunteer Network hosted 18 regional education meetings in partnership with 12 LAM Clinics, reaching 400 attendees.
- The Circle of Hope Transplant Support Program assisted patients & families while assuring that critical LAM tissues were donated to advance scientific research.
- LAM Research:
- The Foundation awarded $410,000 to six LAM investigators via The LAM Foundation Grant Program;
- A $73,000 LAM pilot grant was awarded from UPenn’s Orphan Disease Center’s Million Dollar Bike Ride and the LAM Easy Breathers Cycling Team.
- There are 14 active LAM research protocols funded by LAM Foundation grants.
- Investments by the Foundation in a single cell RNA sequencing project produced preliminary findings that may have implications related to the source of LAM.
- LAM Clinic & Research Network:
- Four new LAM clinics joined the network in Frankfurt, Germany; Dublin, Ireland; New York City, NY; and Hyderabad, India.
- The Foundation launched an extensive outreach program to support clinical trial recruitment for MIDAS and MILED trials and contributed $50,000 to sustain the MIDAS registry.
- Three Clinic Network webinars and a luncheon at the American Thoracic Society (ATS) conference provided a forum for discussing case studies, best practices, and clinical trials.
- In partnership with the Tuberous Sclerosis (TS) Alliance, The LAM Foundation produced the TSC & LAM Conference Series 2019 with meetings held in Atlanta, Boston, Chicago, Los Angeles, and St. Louis, reaching 335 attendees.
- Organizational Excellence and Innovation:
- The first ever Day of Giving, a digital fundraising event, raised $260,000 for LAM research.
- We maintained top tier status with Charity Navigator and GuideStar and re-certified with the National Health Council for the 16th consecutive year.