Our RP family member, Kailey Putnam, along with her parents, Bill and Amy Putnam, mourn the loss of Bill’s Father, and Kailey’s Grandfather, James Putnam. Kailey is currently hospitalized at this moment with problems associated with RP. We wish Kailey well in her recovery, and return to her family. At the request of the family, memorial donations for James should be made to the Relapsing Polychondritis Awareness and Support Foundation in the hope that such donations may help the Foundation, as we pursue our quest to eradicate this horrible disease, and honor her Grandfather’s passing at the same time, as he would have wished. Our deepest condolences go out to the family, as well as our thanks for their support.
The American College of Rheumatology (ACR) Recap
SPECTACULAR does not give a strong enough description our involvement in this year’s meeting of the ACR in San Diego, CA. Three years ago when we attended our first conference, our audience was limited to doctors, stating that the disease was so rare they weren’t really concerned about RP. There were no abstract posters, no sessions and basically nothing about our disease.
Through progress over those two years, this year’s conference was no less than amazing. Traffic at our booth consisted of many, many doctors who were treating 1, 2, 3, even as many as 18 patients. Their biggest concern was patient support, which I must say caught me by surprise!
Along with that, there were two poster sessions for RP abstracts that will amaze you. FOR THE FIRST TIME EVER, there was not one but two lecture sessions on RP in lecture halls which were presented by Dr. Ferrada of the NIH and Dr. Buckner Director of the Benaroya Research Institute at Virginia Mason University of Seattle Washington.
I walked away from the conference feeling proud that, with all the help from everyone, we are making a difference by spreading awareness and support to EVERYONE involved in RP, including physicians. And, most certainly, we couldn’t have done so without YOU.
RPASF is 100% reliant on donations from our supporters like you.
Won’t you consider donating so that we can continue to attend meetings like
this so that we can continue our mission of creating Awareness and Support
for those afflicted by this horrible disease.
Or by mail to RPASF
17310 NE 45th St. #119
Redmond, WA 98052
2017 Walk Recap
By Carol Giordano: The 3 rd Annual Los Angeles Autoimmune Walk was my first involvement as a member of our Foundation, RPASF. In my opinion, it was nothing short of amazing! The work that goes into these walks by the American Autoimmune Related Diseases Association(AARDA), our own Relapsing Polychondritis Awareness and Support foundation(RPASF), all the other booths and other services was outstanding!
Although it’s been two weeks since then, there are still people donating! Visit the Autoimmune Walk website, donations for this walk will be accepted until December 31 st . Their statistics as of today:
Help us reach our goal of: $50,000
$42,295 raised so far
in 3rd Los Angeles Walk
$7,705 to go!
Photos are still coming in from those who attended, but attached are a small example this special afternoon. The spectacular silent auction and raffles, giveaways of printed information, items to use and treats! Celebrity guests, many supporters, and a spectacular catered lunch by Chef Mike of ALIOTTA’S VIA FIRENZE. People of all ages, to work, to walk, to enjoy each other’s company. All for a great cause, AARDA’s motto, “Linking Together for a Cure”.
I felt so fortunate just to be there. I saw friends from years past, and met more I’ve only known only through electronics. These AARDA walks are not just for making money, although that is so important. It is also to come together as “Autoimmune Warriors”, to battle these diseases and come together in understanding each other’s’ needs, as there are more than 100 autoimmune diseases. On behalf of our Foundation, huge thanks go out to the “4 RP” group, who were workers, and/or walkers, or “virtual walkers”. Special appreciation to Lissette Arriola (with her daughter), Carole Cooper, Susan Dale Ross, Erin Ross, Tom Christie, Kenny Ritter, Kate Church, Kristi Anderson, The Linn Family, and, Mike Giordano.
I hope you will join me in looking forward to walks in many cities, and certainly the 4th Annual Los Angeles Walk next year!
The National Institutes of Health (NIH) is interested in studying patients with Relapsing Polychondritis (RP)
Here’s our latest video of Kyle and the Marcelli Mob
showing the highlights from Virginia International Raceway.
Twilight Ride for RP sets records at Mazda Raceway Laguna Seca
Dr. Marcela Ferrada at Johns Hopkins University
RPASF, Inc. , 8843 78th St NW, Annandale, MN 55302