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 40, 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 (MDBR - www.milliondollarbike ride.org), to raise research dollars for orphan diseases. An orphan disease is one where the rarity of the disease means there is a lack of support and resources for discovering treatments. With MDBR in its tenth year, the LAM Foundation has fielded the “Easy Breathers” Team since year one to raise awareness and funding for LAM. This event provided my answer to the question “what can I do to fight this disease”? My cycling passion steered me right into the MDBR to raise dollars for LAM research.

In 2020, Covid forced the MDBR into a virtual event. Two friends and I rode the MDBR locally, 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 indoors on her exercise bike. On her own, at home 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 or supporting the 10th annual MDBR Saturday, June 10 in Philadelphia, PA. Sarah and I will be there. Will you? It takes all of us.

This is why I ride.

“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. Please consider donating to our cause and being a part of transformative research. 100% of your donation will go towards rare disease research.