Many people have heard of auto-immune diseases like lupus, Type 1 diabetes and celiac disease. But have you heard of relapsing polychondritis? Palos Verdes resident Nancy Linn was unfamiliar with it until she received the diagnosis in 2011.
After the initial relief of finally having a name for her condition, she was struck by how little is known about the disease. Relapsing polychondritis (RP) is a rare disorder that may cause inflammation of cartilage throughout the body—particularly in the ears, nose, joints, eyes and airways and larynx. Flares of this disease come and go, and the severity and frequency of the flares vary from person to person. About 5,000 people in the United States are diagnosed with RP each year.
In 2015 the documentary RP: The Ride of My Life chronicled much of Nancy’s journey and raised awareness of the disease. Nancy and her husband, Neil Langberg, followed up with a second documentary, The Race of Our Lives, also directed by friend and fellow South Bay resident Roy Medawar.
“With a South Bay backdrop, it is ultimately a story of purpose, hope, community,” shares Nancy. “It’s a call to action because we have seen the breakthroughs that can be achieved when people come together.”
When Nancy, her brother Michael and others joined the board of directors of the Relapsing Polychondritis Foundation, with Neil as an ambassador, there was little awareness about the autoimmune disease. Some of the most recent scientific articles at the time dated to the early 20th century. The foundation focused its initial efforts on building relationships and raising awareness for RP and other autoimmune diseases, primarily through the Race for RP campaign. The foundation has raised more than $800,000 for research, and that number continues to grow.
“We weren’t sure how all the pieces would come together. It was just blind faith,” says Roy. “Years passed and the foundation grew, and we said that we were ready to tell the story to the world. The journey for me has been amazing because I have been there since the beginning. I get to see how many lives are touched and how early people are getting diagnosed.”
“Purpose is powerful, even when originating from pain, and it can bring people together to create change.”
The Relapsing Polychondritis Foundation directly collaborates with world-class research institutions including the National Institutes of Health, the Penn RP Program, NYU Grossman School of Medicine and Beck Lab, the University of Texas MD Anderson Cancer Center, and Allegheny Health Network Research Institute. The discoveries and advancements they are making in the field of autoimmunity toward better identification, diagnosis and treatment are helping those with any autoimmune disease, not just RP.
“Supporting research is like a grueling uphill climb, and we hope viewers will be better informed about the realities of this rare disease and inspired to join us in driving critical research closer to the finish line,” says Nancy, whose goal is not just to explain what RP is. It’s also figuring out how to keep people engaged. Ultimately, Nancy and Neil hope to reach people in all corners of the globe with their message.
Neil, who is a Ferrari Challenge driver, races around the country with the eye-popping Race for RP design on his car. It’s impossible to miss. Walk around the paddock and other parts of the racetrack, and you’ll see people wearing Race for RP baseball caps and T-shirts.
Researchers also attend events and races to talk about autoimmune diseases—especially RP. Nancy is usually there by Neil’s side during the races to support him as he has supported her.
The new documentary has been screened at festivals in Southern California and beyond, already winning several awards. So far it won the Documentary Feature award of merit at the IndieFEST Film Awards, Best Director of a Documentary Feature at the Culver City Film Festival, Best Documentary Feature at the Los Angeles Movie Awards and Best Director of Documentary Feature at the FirstGlance Film Festival.
Some days are better than others for Nancy, but she continues to focus on taking the negative and making it a positive. The story that she was originally reluctant to tell has already spurred a movement that is bound to become even bigger.
“Purpose is powerful, even when originating from pain, and it can bring people together to create change. We are determined to change the outcome for autoimmune and RP patients,” says Nancy. “Our purpose is greater than one person, one family, one passion. It is a race that needs to continue building a network of supporters so that as we round another turn on the track, the next person might be the one to help cross the finish line.”
To learn more about RP, visit polychondritis.org.
