Chris Davis

Lymphangioleiomyomatosis (lim-FAN-je-o-LI-o-MI-o-ma-TO-sis) is a rare lung disease that usually strikes women during the prime of their lives. Known as LAM for short, this disease is characterized by an abnormal growth of smooth muscle cells, especially in the lungs, lymphatic system, and kidneys. Unregulated growth of these cells can lead to loss of lung function. My daughter Sarah, now 42, was diagnosed with LAM in the summer of 2018.

The specifics of LAM:

• an ultra-rare, difficult-to-diagnose respiratory disease.

• affects mostly women.

THERE IS NO CURE and if there is severe respiratory decline, the only option for survival is double lung transplantation.

A major annual fundraiser for the LAM Foundation is the UPENN Million Dollar Bike Ride, to raise research dollars for orphan diseases, one where the rarity of the disease means there is a lack of support and resources for discovering treatments. With MDBR in its 12th year, the LAM Foundation has fielded the “Easy Breathers” Team since year one to raise awareness and funding for LAM. My cycling passion steered me right into the MDBR to raise dollars for LAM research. And in 2023, I became a Team Co-Captain for the "Easy Breathers".

My first MDBR was in 2020, with Covid forcing the MDBR into a virtual event. Two friends and I rode as a trio, distancing 72 miles along the NH and MA seacoasts. That year, I was tearfully inspired by Sarah’s big heart and grit as she committed to riding the MDBR on her home exercise bike. She rode her own journey of 72 miles, covering 4-6 miles a session, utilizing portable oxygen to overcome her deficit of only 35 percent lung capacity. Her positive outlook, and as a LAMMIE, reflecting, “72 miles, no problem, I got this, I’m Sarah strong” is why I ride. Together we are fighting the good fight. If she can ride with 35% O2, I must and I will.

Please join the LAM Foundation and Team Easy Breathers by riding in, volunteering or supporting the 12th annual MDBR Saturday, June 14 in Philadelphia, PA. Sarah and I will both be riding locally this year, with her on an E-bike. Will you? It takes all of us.

“There are three ways to pedal a bike. With the legs, with the lungs, or with the heart.” Mandible Jones

The Penn Medicine Orphan Disease Center hosts this event to raise money for research in rare diseases. 100% of your donation will go towards LAM disease research.