The National Institutes of Health (NIH) is interested in studying patients with Relapsing Polychondritis (RP)

The Relapsing Polychondritis Awareness Support Foundation (RPASF) and the American
Autoimmune Related Disease Association (AARDA)
Walk & Fun Run

Ephram White Park
Bowling Green, Kentucky
Date: July 8, 2017
Time: 8:00 AM to 1:00 PM

Hi Everyone,
Do you know that when you sponsor a walker on our team, RPASF receives a share of that contribution? Also, when someone you know becomes a sponsor of the walk, our share is even larger.

That’s right!

For the past two years, we’ve partnered with AARDA on the Los Angeles Autoimmune Walks, which have raised a combined total of over $140,000 for autoimmune research. We’ve partnered with AARDA again for a brand-new Autoimmune Walk & Fun Run in Bowling Green, Kentucky on July 8th .

Why?

Because we believe that:

  • there is a common thread that ties all autoimmune diseases together and we want to help find it; and
  • when we link together, we are stronger!

We really need to support this new endeavor for the benefit of the relapsing polychondritis and autoimmune communities.

Please note that AARDA is dedicated to the eradication of autoimmune diseases and the alleviation of suffering and the socioeconomic impact of autoimmunity. RPASF is one of AARDA’s big supporters and a partner on the Bowling Green Autoimmune Walk & Fun Run.

Please join our team!

You don’t have to be present to enroll as teammate, you can be a virtual walker. It’s great fun getting your friends, family members, co-workers and neighbors involved in some good healthy competition for a great cause!

Whether you enroll yourself, donate to the team or even show your support and donation as a sponsor, we know we can guarantee at least one lap around the track for all of our supporters!

Thank you.

Looking For An Adventure This Mothers Day?

Are you looking for something to do on Mother’s Day weekend? How about something totally different?

You could ride a bike on the rolling hills of Monterey as part of the Twilight Ride for RP which is being held in conjunction with Round 1 of the 2017 the Ferrari Challenge (http://www.mazdaraceway.com/ferrari-challenge) weekend on May 12-14 at Mazda Leguna Seca Raceway.

Before and after the Twilight Ride for RP, you can watch a full stable of beautiful “prancing horses” (Ferrari race cars) challenging the 2.3 mile racetrack.  These Italian thoroughbreds are amazing to watch.

Your exciting day or weekend at the track would support research on relapsing polychondritis (RP), which is a rare, and sometimes fatal, autoimmune disease characterized by recurrent widespread inflammation and damage of many body areas. The autoimmunity attacks the patient’s cartilage, which is present in many more areas than the joints, particularly the airway, eyes, ears, and kidneys, to name a few.

Nancy & Neil, Andrea and Mike from the film titled “RP The Ride of My Life” (www.polychondritis.org/the-ride-of-my-life/) will be riding their bikes on the track.  In addition, Neil will be racing in car #153 in the Ferrari Challenge.

Kyle Marcelli, professional race driver and brand ambassador for RPASF, will be cycling as part of the twilight ride and coaching Neil in the Ferrari races.

Bring your RV, your camper or even a tent while you enjoy a full weekend of motorsports at this beautiful, remote venue.

What a treat for mom and family to take a bike ride on the track with fellow RP supporters and to watch some world class motorsports.

The Twilight Ride requires a $10 donation. A limited number of bikes will be available for rental, so please let us know if you need a bike.

Tickets for the racing start at $20 and range up to $350 for a 3-Day Premier Pit Row Suite.

There is additional information via the link below.




  or donate via mail to:

RPASF, Inc.
8843 78th St NW
Annandale, MN 55302

Here’s our latest video of Kyle and the Marcelli Mob
showing the highlights from Virginia International Raceway.

SAVE THE DATE 5.12.17
TWILIGHT RIDE FOR RP
MAZDA RACEWAY LAGUNA SECA

Kyle Marcelli & Nancy tear up the track at Laguna Seca as they #Race For RP

RPASF to Attend the National Center for Advancing Translational Sciences
(NCATS) Advocacy Day — Partnering with Patients for Smarter Science

 

 

June 30, 2017
John Edward Porter Neuroscience Research Center
National Institutes of Health
35 Convent Drive
Bethesda, Maryland

On June 30, 2017, CEO Tom Christie and Medical Advisor Dr. Marcela Ferrada will be attending the inaugural NCATS Advocacy Day — Partnering with Patients for Smarter Science at the National Institutes of Health, John Edward Porter Neuroscience Research Center. The purpose of the event is to inform patients and their advocates about NCATS and its programs, identify patient needs, and collectively discuss ways for improved patient inclusion in NCATS’ translational science activities. The full day event will feature presentations, interactive activities and a poster session. Designed for patients, families, caregivers and patient advocacy groups, the event will foster an open dialogue among patients and their advocates to discuss common translational science roadblocks, brainstorm ideas for improvement, and apply that knowledge to strengthen patient and community engagement at NCATS.

Dr. Marcela Ferrada at Johns Hopkins University

Events

May 12, 2017: Twilight Ride for RP, Mazda Raceway Laguna Seca, Salinas, CA 93908

May 17, 2017: Pediatric Rheumatology Symposium, Houston, TX

May 21-23, 2017: American Thoracic Society International Conference, Washington, DC

June 30, 2017: National Center for Advancing Translational Sciences (NCATS) Advocacy Day, Bethesda, MD

July 8, 2017: Autoimmune Walk, Ephram White Park, Bowling Green, KY

September 14 -15, 2017: RARE Patient Advocacy Summit, Irvine, CA

November 3-8, 2017: American College of Rheumatology Annual Meeting, San Diego, CA

November 18, 2017: 3rd Annual Los Angeles Autoimmune Walk, Culver City, CA

Visit our Media Library

To receive a hardcopy of the brochure, please sent your request to admin@polychondritis.org.

Mailing Address

RPASF, Inc. , 8843 78th St NW,  Annandale, MN 55302