Greetings and thank you for reading this update.
We are pleased to report that 2016 was an outstanding year for The Relapsing Polychondritis Awareness and Support Foundation, Inc. (“RPASF” or the “Foundation”) and the international relapsing polychondritis (“RP”) communities.
Thank you for your efforts to increase awareness and provide support to persons with RP. We greatly appreciate the outstanding accomplishments of our volunteers, advocates, sponsors and donors.
Bringing together people, hope and science, we accomplished a lot in 2016. Following is a summary:
Where we went:
- For the first time, RPASF was an exhibitor at the meetings of the:
- American College of Physicians;
- American Thoracic Society; and
- American College of Rheumatology.
- We returned to the Second Annual Los Angeles Autoimmune Walk, which raised over $4,700 for the Foundation.
- RPASF attended the:
- 2016 Global Genes Rare Disease Summit;
- Rare Disease Week on Capitol Hill; and
- Third Annual Rare Disease Clinical Research Network (RDCRN) Conference.
- The Foundation co-hosted the PhRMA Research and Hope Awards.
Accomplishments as excerpted from Dr. Marcela Ferrada’s letter to the Foundation:
This has been such an amazing year for RP, which could not have been possible without the RPASF!
As you know, in 2016, I was appointed at the federal liaison to the RPASF from the National Institute of Health (“NIH”).
With regard to RP awareness, we attended three major medicine meetings, The American College of Physicians, ACP, The American Thoracic Society ATS and the American College of Rheumatologist ACR. Attendance at these meetings was sponsored entirely by the RPASF.
In terms of research, I recently received the $20,000 matching research grant, $10,000 from AARDA and $10,000 from RPASF. The money from this grant will be used for research in basic science with animals and I look forward to providing regular reports on our progress and activities.
We conducted the first known patient survey study of patients with RP, which could not have been possible without the RPASF. Data from this study have been submitted and accepted to multiple meetings, including the ATS, ACR and the NIH Rare Disease Conference. Currently, I am in the process of writing the manuscript that will include findings that have never been reported before.
RPASF sponsored the first international meeting of physicians and researchers interested in studying RP. The result of this meeting was the creation of the Relapsing Polychondritis Alliance Group, which includes participants from France, Japan, US, UK, India and Canada.
Awareness of RP was also spread via 10 grand rounds sessions where I presented. All the grand rounds expenses were self-sponsored. I did not receive money from the RPASF nor the NIH for traveling; I also did not receive any money for giving the talks.”
- For the first time in history, RP patients have been accepted for research at the NIH.
- A database is being created of RP patients who may be future candidates for clinical trials conducted by members of the Relapsing Polychondritis Alliance Group.
- Dr. Ferrada and RPASF had an abstract and poster approved titled “Clinical Presentations of Relapsing Polychondritis: More Than a Swollen Ear” which was displayed at the American College of Rheumatology (“ACR”) / Association of Rheumatology Health Professionals (“ARHP”) Annual Meeting in Washington, D.C. on November 13-15, 2016.RPASF’s poster was presented alongside three other RP posters from organizations located in France, Japan and the United Kingdom.We believe that this was the highest number of posters addressing RP ever presented at the ACR / ARHP Annual Meeting.
- The International Coalition of Relapsing Polychondritis Support Groups (“ICRPSG”) was formed, which is a collection of support groups from five different countries: United States, United Kingdom, Netherlands, Germany and Australia. We expect that Canada, France and Japan will join soon, totaling eight countries in ICAPG!These participants will share resources and information regarding RP events in their locality.
Every day, the RP community reaches important milestones! Often, our progress is one patient at a time. These accomplishments are achieved via RP support groups, RPASF’s website, multiple Facebook pages, and by phone calls to the Foundation.
RPASF is focused on serving you and I could not be more proud to be associated with everyone involved in our organization.
Our volunteers graciously donate their specific talents and time to travel to events to help RPASF accomplish its mission. When the Foundation has purchased exhibition booths, our wonderful volunteers have supported our efforts by spending up to eight hours a day passing out literature, answering questions and energetically generating RP awareness. Additionally, our volunteers organize and coordinate our awareness and fundraising events. They author and create media, including highquality videos (e.g., Kyle Marcelli, race car driver of Marcelli Motorsports) for our marketing efforts.
All of these activities take time and money. On behalf of RPASF, please accept our appreciation.
We are also pleased to report that the RP community now has hope, vision, and purpose! To me, this is important and exciting.
In closing, I say a special “thank you” to Dr. Ferrada and her teams at the NIH and AARDA. The NIH has welcomed RP patients with open arms and provided quick access to resources, which usually takes years to obtain. AARDA has been generously supportive of RP research, for which we are most grateful.
God bless you all.