6/26/2016 In all areas the CDCN has made a lot of progress. Multiple promising studies into Castleman disease are under way, fundraising and patient outreach events have been a huge success with more on the way and numerous papers have been published in well renowned journals.
One of the studies currently progressing with the CDCN is ACCELERATE a global registry initiative aimed at collecting data from Castleman patients around the world to get a better understanding of the disease. No such collection of data on Castleman’s exists yet, and the collected information will be invaluable to researchers fighting the disease. ACCELERATE is still accepting registrations from Castleman patients. SPEED II is another study running at the moment. It is the most comprehensive study ever started looking into the disease mechanisms and identifying target biomarkers for treatment. SPEED II is still looking for healthy control subjects, so if you are not a CD patient you can still help make a difference by signing up and furthering this important study.
Numerous other studies are currently under way, or also looking for participants. If you are a patient or a loved one of a patient, take a moment to look at the incredible work being done, and how your contribution can make a difference.
Fundraising and patient outreach events are also in full swing. The Million Dollar Bike Ride in Philadelphia raised not only money, but also awareness for disease research and was a great popular success. ElyseStrong Roar for a Cure is coming up in Marlborough, MA this July to do the same, and everyone is invited!
Also the CDCN’s Patient Summit will be at the beginning of November in Philadelphia this year, so save the date.
Recently there have been some significant publications. The most in depth study to date of idiopathic multicentric Castleman Disease was published in the Lancet Hematology by Ami Liu and Dr. Fajgenbaum. Dr.s Chris Nabel and David Fajgenbaum achieved another first in compiling the largest ever case-series of MCD patients with “TAFRO syndrome” in the American Journal of Hematology.
Headway has been made in many directions thanks to the support of countless contributors. Much more work lies ahead to achieve all the necessary wins against Castleman’s. With your support, and more awareness for the disease we can get there!