Bike Ride Raises $200K for Research


In May 2015, the LGDA and its research partner the Lymphatic Malformation Institute (LMI) participated in the 2nd Annual Million Dollar Bike Ride sponsored by the Penn Medicine Orphan Disease Center (ODC), which promotes the development of therapies across a broad range of orphan diseases, and Rare Disease Cycling, a national non-profit cycling team whose members race and ride to raise awareness of orphan diseases. To date this annual event has raised more than 2 million dollars for rare disease research.

In their first year participating in the event, LGDA and LMI each raised more than $100,000 in direct support and matching funds and have combined the proceeds to fund at least 3 pilot projects for research dedicated to lymphangiomatosis and Gorham’s disease.

There were 5 patients and families who traveled to Philadelphia to ride in the event and countless more who supported the teams with online donations. Both teams plan to participate in next year’s event.

Beginning this week, a Request for Applications (RFA) will be broadly distributed to the international scientific community requesting applications for the following:

• Two $51,000 pilot grants focused on basic science and/or clinical research on Gorham-Stout disease (GSD) and generalized lymphatic anomalies (GLA, aka lymphangiomatosis).

 

• One $101,000 pilot grant is available for a project focused on imaging deep lymphatic vessels in Gorham-Stout disease (GSD) and generalized lymphatic anomalies (GLA, aka lymphangiomatosis) patients with thoracic involvement.

Investigators interested in applying should first review the 2015 MDBR Pilot Grant RFA Guidelines before submitting a pre-application. All pre-application submissions are due Monday, September 14, 2015 by 5:00 pm (EST) and must be submitted online. If a pre-application is approved, the investigator will be notified with an invitation to submit a full-application, due October 19, 2015.

photo 2