The Churg Strauss Syndrome Association is proud of its partnership with two outstanding patient organizations that provide services and support to patients with vasculitis or eosinophilic disorders. The Vasculitis Foundation is a well-respected advocacy organization that provides many kinds of services to people with any type of vascultis, including CSS/EGPA. The American Partnership for Eosinophilic Disorders, winner of the 2011 Abbey S. Meyers Award from NORD for outstanding leadership in the areas of education and advocacy, provides services to patients affected by eosinophilic disorders.
The Vasculitis Foundation was founded in 1986 by Marilyn Sampson, a patient and a nurse affected by Wegener’s Granulamatosis (now known as GPA) and was originally called the Wegener’s Granulomatosis Association. In 2004, the name and mission was changed. It became an umbrella organization for all fifteen of the vasculitic diseases, including Churg Strauss Syndrome. The VF now has over 4,000 members worldwide. The VF provides many services to advance the cause of vasculitis and to support vasculitis patients everywhere. The VF promotes and funds research, and provides a bimonthly newsletter, up to date information on its website, patient and physician information packets, an 800 telephone number, support groups, and patient symposiums. In addition, in June 2012 The Vasculitis Foundation established the Vasculitis Foundation Fellowship, providing the opportunity for one or two year tracks designed to support the training of physician scientists who wish to gain clinical expertise in vasculitis and who may also wish to pursue an investigational career in this field.
Partnering with the VF has benefitted CSS patients in many ways. Vasculitis itself is a very rare condition, and Churg Strauss Syndrome and some of the other vasculitides are rarer still. Smaller organizations working alone find it difficult to make an impact in the patient advocacy world. Although the CSSA provides many valuable services, it has been unable to fund research, sponsor symposiums or mount awareness-raising campaigns - all things that the VF has been doing well for years. For this reason, Churg Strauss patients are urged to join the VF
and support its many endeavors.
Many Churg Strauss/EGPA patients are already actively involved with the VF. Some have established vasculitis support groups, some have worked on special projects, some have served on various committees, some have worked on fundraising projects, and many have attended VF Symposiums. Contact the VF if you are interested in becoming involved in their important work.
The American Partnership for Eosinophilic Disorders is a non-profit advocacy organization for those living with eosinophilic esophagitis, eosinophilic gastroenteritis, eosinophilic colitis, hypereosinophilic syndrome, CSS/EGPA and other eosinophilic disorders. They are a resource for patients, their families, physicians, and the medical community.
From the website “...APFED provides accurate, up-to-date information on eosinophilic disorders and related problems. Our goals are to increase awareness, educate patients and physicians, increase funding for research and provide support for the eosinophilic community.”
APFED was founded in December 2001 by a group of mothers of young children living with eosinophilic disorders. The organization has accomplished great things in a short period of time. In 2008, they successfully spearheaded an effort to obtain ICD-9-CM codes for four eosinophilic gastrointestinal disorders. The inclusion of rare diseases such as these in the ICD is extremely important because it gives these diseases visibility in medical information systems and provides data for clinical and health care research. In 2011, APFED was recognized by the National Organization for Rare Disorders (NORD) with presentation of the prestigious Abbey S. Meyers Award for outstanding leadership in the areas of education and advocacy.
Although APFED primarily provides resources to families affected by eosinophil-associated gastrointestinal disorders (EGIDs), and eosinophilic esophagitis (EoE), the website contains information for those afflicted with any eosinophilic disorder, including CSS. In addition, some individuals with CSS suffer gastrointestinal problems and/or esophagitis and will find much information and support on the website. Most importantly, the eosinophilic related research funded and supported by APFED may very well advance an understanding of all of the eosinophilic disorders.
Some of the APFED CSS related information includes a section about eosinophils and a section devoted to CSS.
From the website:
2013 HOPE Pilot Research Grants
APFED is proud to support two HOPE Pilot research grants in 2013. Dr. Praveen Akuthota and Dr. Yui-Hsi Wang are this year's recipients of the $50,000 awards.
Dr. Akuthota is an instructor in medicine at Harvard Medical School and a member of the division of Pulmonary, Critical Care, and Sleep Medicine and the division of Allergy and Inflammation at Beth Israel Deaconess Medical Center. His research proposal examines the role of eotaxin-3, which is a chemokine (a protein that attracts cells to sites of inflammation) that is involved in eosinophilic inflammation. The research will study the molecular effects of eotaxin-3 on eosinophils, such as changes in RNA and protein production, migration, and signaling pathways – all of which will help our understanding of the mechanisms of eosinophil activation.
Dr. Wang is assistant professor, division of Allergy and Immunology at the University of Cincinnati/Cincinnati Children’s Hospital Medical Center. Dr. Wang's research proposal tests test the hypothesis that IL-25 activates the resident ILC2 population to induce eosinophil accumulation; and the hypothesis that IL-25 (a cytokine, which is a protein that is released by cells of the immune system and regulates interactions with other immune cells to generate an immune response) activates a particular population of lymphoid cells called ILC2. These ILC2 cells, when activated, produce large amounts of IL5 and IL13, both of which recruit eosinophils. This work will help in our understanding of what drives eosinophil accumulation into the GI tract.
The CSSA is very fortunate to enjoy the partnership of two very successful organizations, the Vasculitis Foundation and the American Partnership for Eosinophilic Disorders, to better serve the needs of the CSS/EGPA patient population.