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Dear APFED Readers:
Around 3 a.m. my day begins by waking with diarrhea and vomiting. After a couple of hours rushing to the bathroom sweaty and nauseated, it is time to get ready for school. I suffer multiple symptoms including difficulty swallowing, nausea and vomiting, abdominal and chest pain and many more. Eosinophilic Disease is not curable, at least not yet, and I can only manage the symptoms by getting an amino acid formula through a feeding tube that was surgically placed into my stomach.
I often dream about being able to do the things that normal kids  my age do. But the thing I want most of all is to have the opportunity to go through the day not feeling sick. I really do not know what it is like to get a good night's sleep, wake up without feeling nauseous, and get through a day without throwing up and having diarrhea.
Most people don’t understand the struggles of living with an Eosinophilic Disease because the disease is not known by many people. This gala, honoring two special people that have educated themselves about the disease and dedicated themselves to spreading awareness will help all of those who live with an Eosinophilic Disease. Awareness will lead to advances in treating Eosinophilic Disease and maybe, one day my dream will become a reality.
-Sarah
APFED would like to thank our Eosinophil Awareness Week sponsors:
Gold Sponsors:
Ception Therapeutics
Abbott, Ross Products Division
Meritage Pharma
CSL Behring
GlaxoSmithKline
Silver Sponsors:
ADI Health
Sam Brown
Octapharma
Windsor Vineyards
Demi Lovato Speech
Demi Education event President speech
Demi Education event VP speech
Demi Education event Sarah Wisely speech
Demi Lovato and Sarah Wisely
at the May 11th APFED event.
APFED Event Honoring Demi Lovato and Ned Specktor (Video)
Congratulations to Gear West Bike and Triathlon Team on their 3rd consecutive win of the Life Time Fitness Triathlon Corporate Charity Challenge! The Gear West team’s contribution of $11,500 this year brings the total amount raised by the Gear West Team to $117,500 for the American Partnership for Eosinophilic Disorders. Way to go the Gear West Bike and Triathlon team!
October 18, 2009
APFED welcomes Dr. Gerald Gleich to the Board of Directors!
Dr. Gerald Gleich, professor of Dermatology and Medicine at the University of Utah, has extensive experience as both a researcher and clinician with eosinophil associated diseases and has served as a medical advisor for APFED for over 5 years.
Dr. Gerald J. Gleich was born in Escanaba, Michigan and received his degree in Medicine from the University of Michigan. He obtained Internal Medicine residency training at Philadelphia General Hospital and Jackson Memorial Hospital and was a flight surgeon in the United States Air Force. He received postdoctoral training at the University of Rochester and then established a research laboratory for allergic diseases at the Mayo Clinic and Foundation. At Mayo, he was Professor of Medicine and Immunology, Chair of the Department of Immunology, Distinguished Investigator of the Mayo Foundation, and the George M. Eisenberg Professor of Medicine and Immunology. Presently, he is Professor of Dermatology and Medicine at the University of Utah. Dr. Gleich has had a life-long professional commitment to understanding the eosinophil with a focus on its distinctive granules. He and his colleagues have isolated, characterized, identified the cDNAs and the genes and established assays for measurement and localization of all of the principal granule proteins. These efforts lead to the recognition that eosinophil degranulation with release of cytotoxic and cytostimulatory cationic ptoteins into tissues is characteristic of eosinophil-associated diseases and to recognition of several novel syndromes. Dr. Gleich has served on many committees and editorial boards, including Chair of the WHO Subcommittee on Standardization of Allergens, the editorial board of the Journal of Allergy and Clinical Immunology, the editorial Board of the Journal of Immunology, Member and Chair of the Board of Scientific Counselors, NIAID, Member and Chair of the Immunological Sciences Study Section NIH and Chair of the Data and Safety Monitoring Board of the NIAID. Dr. Gleich has received numerous awards and honors, including memberships in Phi Beta Kappa, Phi Kappa Phi, Alpha Omega Alpha and Sigma Xi, the American College of Physicians (Fellow), the American Society for Clinical Investigation, the American Association of Immunologists, the Collegium Internationale Allergologicum, the Association of American Physicians; named lectureships including the John M. Sheldon Memorial Lecturer of the American Academy of Allergy, Asthma and Immunology 1976, 1982 and 1988, the Stoll-Stunkard Lecturer American Society of Parasitologists, Distinguished Lecturer in Medical Sciences Mayo Clinic and Foundation; and awards including the Landmark in Allergy Award Recipient, Fellowship award of the American Association for the Advancement of Science, Honorable Membership in the Pharmacia Allergy Research Foundation and Original Member, Highly Cited Researchers database, ISI Thomson Scientific. Lastly, Dr. Gleich has contributed over 600 articles to the scientific literature. He has seven children and three grandchildren. He enjoys skiing, hiking and biking.
APFED is honored to have Dr. Gleich, a leader in the field of eosinophil research, join the APFED Board of Directors! We look forward to his guidance in the years ahead.
Dr. Srdan Verstovsek joins the APFED Medical Advisory Panel
Dr. Srdan Verstovsek brings vast and broad experience with Hypereosinophilic syndrome and related disorders. He is a Medical Oncologist and Associate Professor in the Department of Leukemia at The University of Texas M. D. Anderson Cancer Center. He received his medical degree in 1992 from the School of Medicine, University of Zagreb, Croatia. While receiving his medical education, he spent his summer semesters working at the Roswell Park Cancer Institute in Buffalo, New York. After graduation from medical school he continued his research activities there and was awarded a Ph.D. degree. Dr. Verstovsek went on to complete an Internal Medicine Residency at the State University of New York in Buffalo followed by the Oncology-Hematology Fellowship at M. D. Anderson. Dr. Verstovsek has maintained an active interest in leukemia during most of his research and clinical training with emphasis on experimental therapeutics and translational research. He has been a part of the Leukemia Department at M. D. Anderson since 2001.
His main clinical interest is myeloproliferative disorders (MPD), with his efforts focused on the understanding biology of and developing new therapy for MPDs. Dr. Verstovsek is the leader of the MPD Program at MD Anderson. He has been very active in evaluating novel therapeutics in clinical studies and has been principal investigator of more than 20 clinical trials for patients with MPD. He has published more than 200 scientific papers. Dr. Verstovsek is actively involved with national patient groups and has lectured both nationally and internationally on these disorders. He is an active participant of the International Working Group for Myelofibrosis Research and Treatment (IWG-MRT), and the NCI Funded MPD Research Consortium.
FIRST INTERNATIONAL GASTROINTESTINAL
EOSINOPHILIC RESEARCH SYMPOSIUM ON EMERGING DISEASE WORLDWIDE
North American Society for Pediatric Gastroenterology, Hepatology and Nutrition
Hosts Collaborative Landmark Meeting
Shares New Diagnostic Guidelines and Sets Stage for Research Agenda
Orlando, FL; October 17, 2006 – The North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) today hosted the First International Gastrointestinal Eosinophilic Research Symposium (FIGERS) focusing on the role of eosinophils in gastrointestinal diseases. The Symposium shared new diagnostic criteria, built interest among young investigators, developed a research agenda for cooperative multi-center studies, and offered therapeutic strategies for the thousands of children and adults who suffer from this disease.
In a first-ever worldwide collaborative effort, experts met to discuss an increasingly recognized disease “Eosinophilic Esophagitis (EE).” EE is an isolated eosinophilic inflammation of the esophagus. It may cause abdominal pain, nausea, regurgitation and/or vomiting. If EE persists for years, it may cause a narrowing of the esophagus that leads to dysphagia or difficulty in swallowing. In young children, many of the symptoms of EE mimic those of gastroesophageal reflux. GERD and EE are clearly separate diseases that demand different treatment strategies and carry potentially different long-term consequences.
Held in Orlando Florida in conjunction with the NASPGHAN annual scientific meeting, FIGERS involved the participation of 16 world-renowned speakers and panelists who reviewed and discussed the first scientific guidelines on EE. “FIGERS is unique in that it brought together multiple subspecialists including pediatric and adult gastroenterologists, allergists, pathologists and basic science researchers all working toward understanding the disease process of eosinophilic esophagitis,” stated Chris Liacouras, MD, Co-Chair of the Symposium’s Steering Committee, who is based at The Children’s Hospital of Philadelphia and the University of Pennsylvania School of Medicine.
Research indicates that the prevalence of EE is increasing with diagnosis and treatment continuing to be a challenge. According to a population based demographic study of the pediatric population with EE residing in Hamilton County, Ohio, the incidence of pediatric EE was one in 10,000 with the prevalence being four in 10,000 which may be higher than those for other well-recognized inflammatory gastrointestinal disorders such as Crohn’s disease.
To address the critical issues, the Panel at the Symposium discussed diagnostic criteria, the natural history of the disease, the pathogenesis and evolving treatment strategies. “This symposium posed an extraordinary opportunity to initiate a long lasting research agenda for this emerging disease. Through multi-center collaborations and cross specialty fertilizations, we will be able to understand more about the pathogenesis, trace the natural history and determine the best therapeutic approaches,” explained FIGERS Co-Chair Glenn Furuta MD who is based at Children’s Hospital Boston and Harvard Medical School.
President of NASPGHAN, Philip M. Sherman, MD, FRCPC, who is on the faculty at the Hospital for Sick Children, University of Toronto, Canada said, “The diversity of support and interest including an R13 award through the National Institutes of Health, support from professional and advocacy groups and industry, as well as the tremendous attendance at the meeting demonstrates the need to address the issue through a multidisciplinary approach.”
APFED President and Founder Beth Mays concurred, “The FIGERS meeting provides a ray of hope for our families living with life-altering eosinophilic disorders. The new guidelines will help make the distinction between EE and reflux common knowledge among medical professionals.”
The North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) represents more than 1300 pediatric gastroenterologists in the United States, Canada, and Mexico. NASPGHAN is a world leader in advancing the science and clinical practice of pediatric gastroenterology, hepatology, and nutrition. NASPGHAN’s mission is to improve clinical care, promote research, and facilitate medical education relating to infants, children, and adolescents with digestive disorders.
FIGERS support was provided through a National Institutes of Health R13 award as well as additional support from a grateful family, the American Academy of Asthma, Allergy and Immunology, American Partnership for Eosinophilic Diseases, AstraZeneca, Genzyme, GlaxoSmithKline, Ross Products, Nutricia North America and TAP Pharmaceuticals.
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