Board of Directors
The Churg Strauss Syndrome Association, founded in 2004, is a 501(c) (3) organization run entirely by volunteer efforts led by the Board of Directors. The Board consists of dedicated people affected in some way by this rare and mysterious disease. The CSSA Board works tirelessly to develop patient resources, raise awareness of the disease both among the general public and in the medical community, promote research and collaborate with other organizations to best serve the needs of Churg Strauss patients and their families. In addition, the CSSA provides up-to-date news and information on its website and provides a forum for patient stories. The current Board consists of a cross section of people affected by CSS who bring unique talents and skills to the organization. All of them share a desire to help better the lives of CSS patients everywhere.
Jane Dion, Director
Montgomery, MA 01085
Jane Dion, who is the current Director of the Churg Strauss Syndrome Association, is also one of the organization's founders. She was diagnosed in 2003 and founded the organization in 2004 to fulfill an urgent need for patient resources and advocacy for this rare disease. In order to secure non profit status, Jane formed a corporation before successfully applying for 501(c)(3) status for the CSSA. In addition Jane, along with Cindy Smoot and Carol Kavanaugh, created a website that is now referenced by over 1000 visitors monthly from around the world. The CSSA website is second only to Johns Hopkins when one googles "Churg Strauss Syndrome". Additionally, Jane, Cindy and Alicia Perkovich developed CSSA brochures, now available in three languages, which have been sent to patients worldwide. Jane collaborates closely with the Vasculitis Foundation to better serve the needs of CSS patients. She developed resources for medical professionals with up-to-date CSS research articles and information to be distributed at physician conferences. She serves on the VCRC Steering committee and is a member of CPAG and the NIAMS Coalition. In her previous life, Jane was a social worker, teacher and hospice volunteer.
Alicia Perkovich was diagnosed with Churg Strauss Syndrome in August of 2007 and has since become an enthusiastic patient advocate for the CSSA and a member of the Education and Awareness Council for the Vasculitis Foundation. She works professionally as an commercial Interior Designer and has used her creative background to design new brochures for the CSSA. She has represented the CSSA at a patient advocacy seminar hosted by the National Heart, Lung and Blood Institute (NHLBI) and also attended a steering committee meeting for the Vasculitis Clinical Research Consortium (VCRC). She volunteers her time to fundraising efforts in addition to providing resources and support to others recently diagnosed with CSS and other types of vasculitis.
Feeding Hills, MA
Kate Tierney was diagnosed with Churg-Strauss in 2000. She has run two successful golf tournaments for the Vasculitis Foundation and plans on continuing that tradition annually. In the past she has done special shopping day passes to help benefit the CSS. Kate's family also had donations go to the CSS from when her grandfather passed away. She enjoys contacting and keeping in touch with the amazing and inspirational people with CSS and other forms of vasculitis around the world. She has participated in a clinical study and in research projects for CSS, with the hope to someday find a cure. Kate has also been written about in a medical research journal about CSS in children because she was just 16 when she was officially diagnosed. One of her favorite accomplishments is starting her own website to keep in contact with other CSS patients and let them know they are not alone. Her website address is www.katetierney.info. Kate currently helps with one of the VF support groups in her area. In the past Kate has worked as a counselor to abused children and children with behavioral problems. If you are interested in contacting Kate please go to her website and hit e-mail.
Fort Worth, Texas (817) 798-8403
Becky Edgar was diagnosed with Churg Strauss Syndrome in August 2006. She is now retired after 32 years of service with a leading aeronautics company. She attended the 2008 Vasculitis Symposium at Mayo Clinic. She is passionate on raising awareness and providing support to others with CSS. She has volunteered by answering correspondence from newly diagnosed vasculitis patients. Becky has been appointed secretary of the CSSA.
In Loving Memory
Gloria was a gracious, lovely person who sat on the CSSA Board of Directors and mailed our brochures (usually along with a lovely note) to patients from around the world. She died on October 21 2012. She is missed.