In celebration of the outstanding global awareness generated by the Race for RP logo flying on the No. 63 Ed Carpenter Racing Scuderia Corsa Chevrolet driven by Ed Jones at this year’s Indianapolis 500, Race for RP has dedicated the month of June to helping its friends who have relapsing polychondritis or “RP”.
Today, Race for RP will launch its “Friends with RP” campaign, which will use patient testimonials and the power of social media to raise awareness of RP’s complex symptoms and provide financial support to facilitate treatment and research at the National Institutes of Health (NIH).
Over the next four weeks, Race for RP will highlight the unique difficulties of RP sufferers. Recently, Race for RP released a poster to better help diagnose relapsing polychondritis, as well as a new video explaining the complexities of the disease. Because there is currently no test that can make a definitive diagnosis, many patients go for years without receiving the treatment they need. During that time, the disease can cause irreparable harm to the body’s cartilage, most typically the ears and nose, but also the eyes, heart, and throat.
This was the case for Montana resident Tedi LaMere. An athlete all her life, she began to struggle breathing when climbing up the stairs and knew something was seriously wrong. Though she found a pulmonologist who correctly diagnosed her with RP, her rheumatologist wasn’t convinced. Over the next year, Tedi went without treatment, and the collapse on one side of her airway went from 65 percent to greater than 99.
By this point, Tedi was passing out several times a day, unable to drive, and having more trouble breathing, so she looked into loans to finance the travel expenses to the NIH. “It’s frustrating when you know what damage is being done, and nobody is doing anything about it because they’re too afraid to touch you,” she says. “But I thought, ‘I am going to die if I don’t do this.’”
Tedi could still be without an official diagnosis today if not for Race for RP’s gifts to the Friends of Patients at the NIH, which provides financial support to patients like her. That material support makes the organization an invaluable ally to RP patients.
Every Wednesday in June, Race for RP is publishing the story of an RP patient and asking their Facebook followers to take two simple actions: share that story publicly, and tag Race for RP. Then, for each additional friend tagged in the post, Race for RP will donate $1 to Friends of Patients at the NIH (up to a total of $10,000). “We’re delighted to have the outstanding support of Race for RP.” says Dave Bammert, President of the Relapsing Polychondritis Awareness and Support Foundation (RPASF),
“Race for RP has generated incredible awareness for RP and continues to be our primary donor. Their financial support enabled the much-needed RP program to be implement by the Friends of Patients at the NIH.”
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About Race for RP
Race for RP supports research, awareness programs, and cares for those who are affected by relapsing polychondritis (“RP”) and related diseases. For more information, visit https://raceforrp.org/.
About Relapsing Polychondritis
RP is an inflammatory disease that affects the cartilage. This horrible disease can change the shape of affected patient’s nose, cause ears to be painful, red and deformed, lead to red painful eyes, as well as pain and swelling of multiple joints including shoulders, elbows, wrists, fingers, knees, ankles and toes. It can cause pain on the anterior part of the chest due to inflammation on the costochondral joints as well as the rib cage. Patients often complain of a sore throat, shortness of breath and voice changes. In some extreme cases, air passages can collapse due to uncontrolled inflammation leading to death. For more information, visit http://bit.ly/RP_Poster and watch the video which outlines details about the disease.
RP Study at the NIH and Friends of Patients at the NIH
If you would like to participate in a relapsing polychondritis study at the NIH and be consideraed for financial assistance (for patient-related travel) from the Friends of Patients at the NIH, please contact:
Wendy Goodspeed, RN
Research Nurse Specialist
National Institutes of Health
About Race for RP
Race for RP supports research, awareness programs, and cares for those who are affected by relapsing polychondritis and related diseases. For more information, visit https://raceforrp.org/ and watch https://www.youtube.com/watch?v=ZUwxHweOhjw&feature=youtu.be.
RPASF’s purpose is to increase awareness about relapsing polychondritis, provide for those who are affected by RP, support research to advance a cure, and promote quality care for patients with RP. For more information, visit http://www.polychondritis.org/.