Race for Relapsing Polychondritis Sponsors Friends’ Night Out, an Evening Celebrating 35 Years of Hope and Discovery with Friends of Patients at the NIH

Race for RP in conjunction with the Relapsing Polychondritis Foundation was pleased to be the Event Sponsor of the Friends of Patients at the NIH 2019 Friends’ Night Out. It was an evening dedicated to the partnership of patients, doctors and researchers to find lifesaving cures that benefit us all.

Nancy Linn, founder of Race for RP and Chair of the Relapsing Polychondritis Foundation, delivered a compelling address to a room full of attendees during which she explained that she herself is an NIH research patient.  And how the valuable research performed by the NIH had a profound impact on her life and inspired her to work to improve and transform the lives of other patients.

Friends’ Night Out and Race for Relapsing Polychondritis

During the event, Friends of Patients premiered a powerful short film produced by Race for RP, featuring the stories of several NIH patients and the crucial support they received from Friends of Patients at the NIH.  The video truly underscores the important work being done by Friends of Patients at the NIH and the direct impact they have on the lives of patients and their families.

Patient Stories

And who better to provide the musical entertainment than The Affordable Rock ‘n’ Roll Act band, a dynamic and talented ensemble whose members consist of scientists and researchers from the NIH.  Led by non-other than Francis S. Collins, MD, PhD, NIH Director, the band played a catalog of great songs from the Beatles to Van Morrison, and kept the crowd dancing throughout the evening.

The Affordable Rock ‘n’ Roll Act band.

The 2019 Friends’ Night Out was an amazing evening for an amazing cause.  Friends of Patients at NIH provides emotional, financial and logistical support to patients while they are receiving groundbreaking and life-saving treatments at the NIH. They are champions of NIH patients, helping to cover their essential needs so they can focus on recovery, healing and their unique role in health discoveries. These breakthroughs provide hope for the patients, their families, and future generations.  Race for RP and the Relapsing Polychondritis Foundation is proud to partner with Friends of Patients at the NIH.

The National Institutes of Health (NIH) is studying patients with relapsing polychondritis (RP). Adult and pediatric patients are invited to come to the NIH in Bethesda, MD to participate in a research study. If you would like to participate in the relapsing polychondritis study and be considered for financial assistance, please contact:

Wendy Goodspeed
Research Nurse Specialist
National Institutes of Health

Comments (1)

Hi, I have not been diagnosed yet, but I believe I have RP and it has effected my CNS. I am near Raleigh, NC and can not find anyone to do or treat me at Duke or UNC. I have been to Cleveland Clinic, UVA, Hopkins, HSS, UMd, GW, and more. Nada. I have a textbook pain pattern and extreme symptoms and pain.

Is there someone I can talk with who might help me find a doctor who will help and treat? Duke pulled me off of Humira and Sulfasalizine and pain management saying nothing wrong. My imaging shows massive inflammation in my neck, throat, nose, head etc. My ears and nose, cartilage are on fire, but so is my brain. My ear lobes are pain free!

I would like to go to Wash and see the NIH. I have zero support and a brother who has been reporting me for disability fraud and worse for the past 20 years! I was pulled into treatment for chronic Lyme and on antibiotics for nearly 10 years and did not get better.

Helen Nicholaou

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