Eosinophilic Granulomatosis With Polyangiitis patients attend 2013 VF Symposium

Eosinophilic Granulomatosis With Polyangiitis patients attend 2013 VF Symposium


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The Symposium offered EGPA patients the opportunity to learn about disease specific information, meet with some of the leading experts and gather together for an wonderful dinner at a local Italian restaurant. 

 Expert presenters for the CSS/EGPA sessions were  Christian Pagnoux,  MD, of Mount Sinai Hospital-Toronto and Rodrigo Cartin-Ceba, MD, of the Mayo Clinic. Not only did they offer informative and up to date information about CSS, they also tirelessly answered many questions from the enthralled audience. The presentations  covered many aspects of CSS including information about every aspect of the disease and news about current and new research.

Afterwards, The Churg Strauss Syndrome Association presented Dr. Cartin-Ceba and Dr. Pagnoux each with a small token of their appreciation for their dedication and support of CSS/EGPA patients.

General Vasculitis sessions were presented by the leading experts in their fields and were of great interest to all in attendance. Just a few of the sessions and presenters were:

 Immunity and Autoimmunity in Vasculitis:  Paul Monach, MD, PhD

The Role of Genetics in Vasculitis: Sharon Chung, MD, MAS

Chronic Medical Effects: Phil Seo, MD

Vascular Issues for Patients with Vasculitis (Heart Healthy): Emile Mohler, III, MD

Fatigue and Vasculitis: Peter Grayson, MD, MSc

Lung Involvement in Vasculitis: Rodrigo Cartin-Ceba, MD and Christian Pagnoux, MD

Fatigue and Vasculitis: Peter Grayson, MD, MSc

Pain Management in Vasculitis: John Farrar, MD, PhD

Biomarkers and new translational research projects in vasculitis: Peter Grayson, MD, MSc 

Research results: Recap of the past two years: What have we learned? What does it mean for patients?  Carol A. Langford, MD, MHS

Current clinical research trials in vasculitis: Peter A. Merkel, MD, MPH

 On Saturday night, the entire Vasculitis Foundation family attended a celebration banquet. Steve Madincea,of the VF Board of Directors was the very engaging host. The banquet was well planned and the food was delicious. Ed Becker, also from the VF Board of Directors and a good friend to the CSSA was presented with the prestigious Bruce Macdonald Spirit Award for 2013. The Bruce Macdonald Volunteer Spirit Award was established in 2006 to honor outstanding volunteers of the Vasculitis Foundation. The award is named after Bruce Macdonald, a longtime member and volunteer of the organization who led the way in connecting patients and family members with the educational and support resources needed to live successfully with vasculitis. Ed, as founder and director of the Pan Support Network, is the producer of the Extraordinary Vasculitis Stories Project, which features interviews of patients and family members sharing the impact that vasculitis has had on their lives. This year Ed expanded the project to interview physicians discussing diagnosis and treatment, and researchers discussing their studies.  The goal of the Video Project is to spread awareness by sharing vasculitis stories of extraordinary people to highlight the impact these chronic conditions have on vasculitis patients and also on their families, friends and loved ones. The award was well deserved! 

 Special thanks for making the VF Symposium such a great success go to Joyce Kullman, Executive Director of the VF, who puts her heart and soul into this event, all of the VF staff who work tirelessly on behalf of VF patients everywhere, the many volunteers who help organize the event, Grace Eisen and the entire VF Board of Directors, Dr. Peter Merkel, who helped organize the event in his new hometown, and most of all, the dedicated medical professionals who gave their time and effort (and a whole summer weekend!) to educate and inform the vasculitis patients in attendance.

 Jane Dion,  August, 2013

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