Relapsing Polychondritis Awareness and Support Foundation (RPASF) in Conjunction with Global Genes & Festival of Children Foundation Partner for 2018 RARE Carousel Fundraising Campaign to Benefit Pediatric Patients Stricken with Relapsing Polychondritis (RP) as Well as Other Rare Diseases
THE 2018 RARE CAROUSEL OF POSSIBLE DREAMS
The RARE Carousel is a unique opportunity between the Relapsing Polychondritis Awareness and Support Foundation, Festival of the Children Foundation and Global Genes that provides an exciting and innovative way for RPASF and other participating organizations to raise funds, cultivate new donors, increase awareness to enable education, develop support and hopefully fund a first ever symposium around diagnosis and treatment options for our children stricken with RP.
The Relapsing Polychondritis Awareness and Support Foundation (RPASF) is proud and excited to be a participating organization in the 2018 RARE Carousel! Because of Awareness, Rare Diseases are being discovered in children ever more and more often. Funding is greatly needed to study these diseases as they are overlooked or misdiagnosed in favor of more common diseases.
There is an urgent need to address the growing population of Pediatric RP patients and their families. 100% of the funds raised by our team will go directly to RPASF, Inc and will be used to make resources available to educate providers and patients ‘families. Also, to bring together professionals and families to share current therapies, studies, legal consults and other opportunities, as well as discussion forum(s) and fun activities for the children. Ultimately if we reach our $50,000 goal, the funds will be used by RPASF will be used to host a symposium on Pediatric Relapsing Polychondritis. We need team members as virtual Riders and as such recruit your own sponsors in support of yourselves and our team RPASF, Inc.
Pediatric Relapsing Polychondritis – Rare Beyond Compare
For more information, to register, or to join RPASF team or donate, please visit http://www.festivalofchildren.org/site/TR/Events/General?team_id=2249&pg=team&fr_id=1510
For a complete list of participating organizations visit: globalgenes.org/rarecarousel/.
About the Relapsing Polychondritis Awareness and Support Foundation
RPASF is a 501 (c) (3) non-profit organization dedicated to supporting and advocating Awareness and Support for patients, care givers and physicians across the globe. We also strive to educate the public as well as representing our patients to the global medical communities. For more information please visit www.polychondritis.org
About Global Genes
Global Genes is a leading global rare disease patient advocacy organization. The group’s mission is to connect, empower and inspire the rare disease community. Recognized worldwide by the Blue Denim Genes Ribbon™, Global Genes unites experts, advocates and patients of all ages to stand together in hope for treatments and cures for the estimated 7,000 rare and genetic diseases that impact approximately 30 million Americans and over 350 million people worldwide. For more information, visit www.globalgenes.org.
About Festival of Children Foundation
Festival of Children Foundation is a 501 (c) (3) non-profit organization that serves to bring together and coordinate the efforts of charities, companies and individuals who actively work to improve the lives of children. Festival of Children Foundation gives a voice, guidance and support. 100% of the administrative costs are covered by designated funding, allowing donations to go further in direct support of programs and services that improve the lives of children. www.festivalofchildren.org
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. , 17310 NE 45th St #119, Redmond, WA 98052