“RP The Ride of My Life”
This powerful documentary about Nancy and her family’s journey through many years of struggling with painful and debilitating symptoms with an unknown cause, eventually being diagnosed with an extremely rare autoimmune disease, Relapsing Polychondritis (“RP”), and ultimately finding the strength and courage to persevere with a purpose to raise awareness about RP, help others in diagnosis and support, and advance research efforts about this and other autoimmune diseases in pursuit of treatments and cures.
LATEST NEWS
Grace Alarcon-Isla is worried about her son. When Adam was diagnosed with relapsing polychondritis three years ago, at the age of 15, his rheumatologist had taken charge and coordinated his care using a multidisciplinary approach. However, that changed when he turned 18.
When Rachel Wollan was diagnosed with relapsing polychondritis by a doctor near her home in Fairmont, Indiana, her first instinct was to take action before her appointment with a specialist a week later. “I’m a researcher,” she says. “I am…
Though all of her tests were coming back normal, Tedi LaMere knew that something was seriously wrong. First, she had issues with her heart that were so severe she had to travel from her home in Montana to Denver and…
On June 5th, 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).
Relapsing polychondritis, a rare autoimmune disease, becomes Illinois most searched disease on Google, further bolstering the advocacy and awareness initiatives by Race for RP and RPASF.
EVENTS
Race For RP on Social Media
In May, race car driver @KyleMarcelli was honored with the Champion Award from @AARDATweets for his advocacy work as an ambassador for #autoimmunedisease research and awareness. @RPASF_Official @AHNtoday #RaceforRP #Autoimmunity #Autoimmune
Kyle Marcelli - AARDA Champion Award Recipient
On May 11, race car driver Kyle Marcelli was honored for his advocacy work with the Champion Award from the American Autoimmune Related Diseases Assoc...
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We’re rooting for you, @Scuderia_Corsa!
1hr 30 min to go radio to @toni_vilander “we keep pushing, we have the car” #LeMans24
L67 @24hoursoflemans @CooperMacNeil brings the #62 @RaceWeatherTech #Ferrari to Robert Smith in P4 #LeMans24
Do you know a teenager diagnosed with RP? What are their symptoms, and what will happen when they turn 18?
In our third Spotlight of the month, Grace Alarcon-Isla describes how her son was diagnosed with RP at 15 - and how Alberta's health system changed after he became an adult. To help parents like her, share this post, tag Race for RP - "Relapsing Polychondritis", and tag your friends. For each tag, $1 will be donated to Friends of Patients at the NIH (up to at $10,000). For instructions on how to publicly share a Facebook post with your friends, go to raceforrp.org/howtoshare.
#RelapsingPolychondritis #RaceforRP Relapsing Polychondritis Awareness and Support Foundation
bit.ly/PatientSpotlight3
On May 11 race car driver Kyle Marcelli was honored for his advocacy work with the Champion Award from the American Autoimmune Related Diseases Association (AARDA). At the organization’s yearly spring benefit, hosted at the Detroit Athletic Club and aptly themed “Bound by a Common Thread,” attendees celebrated Marcelli’s success as an ambassador for autoimmune disease research and awareness, including his key contributions to the unprecedented collaboration of AARDA, the Allegheny Health Network Autoimmunity Institute, Relapsing Polychondritis Awareness and Support Foundation, and Race for RP - "Relapsing Polychondritis".
Currently, there is no cure for autoimmune diseases, and their treatment often requires a team of specialists. Collaborations between organizations is essential for care, research, and awareness, which makes contributions like Marcelli’s invaluable.
Congratulations, Kyle, for this well deserved award. And thank you for your Drive to Eradicate Autoimmune Disease.
#RaceforRP #RelapsingPolychondritis #Autoimmune #AutoimmuneDisease #AutoimmuneDiseases #AutoimmuneWarriror #Autoimmunity #AutoimmuneAwareness
Help patients like Rachel get to the NIH! Each time you share this post and tag a friend, $1 will be donated to Friends of Patients at the NIH (up to $10,000).
For instructions on how to publicly share posts, go to raceforrp.org/howtoshare
To read Rachel's full Spotlight, click below.
bit.ly/PatientSpotlight2