Highlights from the Million Dollar Bike Ride
Congratulations to the LAM Easy Breathers cycling team and their co-captains, Patricia Ortiz and Ray Chen for riding to the finish line at the UPenn Orphan Disease Center’s Million Dollar Bike Ride!
Not only did our Easy Breathers brave the cold rainy weather to cross the finish-line, they also hit their goal of raising $50,000 for LAM Research. Because they hit their goal, UPenn Orphan Disease Center will match those funds, dollar for dollar. Now two LAM researchers can receive grants to further their research studies!
So much took place over the weekend in Philadelphia during the Million Dollar Bike Ride festivities and The LAM Foundation took full advantage of the opportunity to raise LAM awareness.
The LAM Foundation’s Board Chair, Andrea Slattery, hosted a wonderful fundraiser dinner at the Marion Cricket Club on the Thursday evening before the Million Dollar Bike Ride. Andrea’s fundraiser leveraged a LAMplify challenge grant to double the impact of her donor’s dollars.
Andrea’s fundraiser also gave the Foundation a forum to have a new awareness video produced. “The LAM Foundation: A Model for Rare Disease Advocacy” offers insight into why giving to The LAM Foundation can help fund research, which then can be turned to help other rare diseases. View the video and then share it with your family and friends.
On Friday, The LAM Foundation's Executive Director, Sue Sherman, spoke at the RARE Patient Advocacy Summit. Sue’s topic was “Organizational Growth: Building Community & Longevity. Sue joined other rare disease advocacy groups for the half-day program that covered topics such as Patient Engagement in Drug Development, Building a Plan to Pursue Research, and Finding and Raising Funds for Research.
LAM Community volunteers and the LAM Easy Breather’s Fans – we could not pull off the Million Dollar Bike Ride without all of you! Thank you to Patti Bebien Aronoff for gathering the LAM Community in the Philadelphia area to volunteer for this event. Sue joined other rare disease advocacy groups for the half-day program that covered topics such as Patient Engagement in Drug Development, Building a Plan to Pursue Research, and Finding and Raising Funds for Research.
Over 600 people ride in the MDBR. Volunteering your time to this event creates an amazing atmosphere to all who are participating. A special shout out to all of the LAM Easy Breather Fans who lined the bike route cheering everyone on. 70+ miles through the streets of Philadelphia on a cold rainy day is no picnic. Your support can uplift even the cyclists who had the bad luck of getting a flat tire.
And finally, thank you to all 45 members of the LAM Easy Breather cycling team; you are an amazing community of women with LAM, family, friends,researchers and clinicians. Your dedication to raising funds and sharing LAM awareness is nothing short of amazing.