The National Neutropenia Network (NNN) and the Severe Chronic Neutropenia International Registry (SCNIR) will host the 8th Annual Neutropenia Family Conference in Seattle, Wash., on July 17-20.
Patients, families and healthcare professionals are all welcome and encouraged to attend. The conference will focus on the rare and life-threatening disease – severe chronic neutropenia (SCN). Discussions will include optimal diagnosis and treatment options, including the use of G-CSF injections and bone marrow transplant options. Patients and their families will be briefed on the latest research and available resources for SCN by several of the nation’s leading SCN physician experts. The experts also will be on hand for further detailed discussions and one-on-one consultations with the SCN-afflicted patients and their families.
“This patient group is very fortunate to have such dedicated, caring physicians and researchers who support our conference year after year,” said Lee Reeves, president of the National Neutropenia Network. “These doctors have offered our patients not only real solutions that they can use in their daily lives, but they give them the two strongest weapons of all – education and hope.”
Confirmed speakers for the 2008 event include Laurence A. Boxer, MD, Professor of pediatrics and communicable diseases, Director of pediatric hematology/oncology, University of Michigan and SCNIR Co-Director; David C. Dale, MD, Professor of Medicine, University of Washington, SCNIR Director and president of the American College of Physicians; Peter Newburger, MD, Professor of Pediatric Hematology/Oncology, Vice Chair of Pediatrics, University of Massachusetts Medical School, and Co-Director of the SCNIR; as well as several other expert hematologists and other professionals.
There will be several networking and story-sharing opportunities for the attendees and fun-packed learning activities are scheduled for the SCN Camp for the children. Amie Pritchett, and her team of child life specialists from the Children’s Hospital & Regional Medical Center at the University of Washington, will facilitate the children’s program.
For registration information, visit the NNN Web site at neutropenianet, or contact Lee Reeves, NNN president, at 517.294.0736 (cell) or email leereeves99gmail. Media professionals are welcome to attend. Call 480.219.5921 to receive a complimentary press pass.
About Severe Chronic Neutropenia:
Neutropenia encompasses a group of rare hematological disorders in which a patient’s absolute neutrophil count (ANC) rests at a dangerously low level. The neutrophil is the white blood cell charged with fighting bacterial and fungal infections. In most cases, SCN is due to underproduction of neutrophils in the bone marrow. The three forms of SCN are congenital neutropenia, cyclic neutropenia and idiopathic neutropenia. The idiopathic group encompasses the autoimmune form (most commonly found in infants and young children) in which an individual develops an antibody that attacks and kills any circulating neutrophils. Most forms of neutropenia are life-long and all forms leave the patient severely immunocompromised. The congenital form of neutropenia has recently been suggested to be a pre-leukemic condition for some patients.
About the National Neutropenia Network:
The National Neutropenia Network (NNN) is a volunteer driven 501(c)3 nonprofit organization established in 1994 to promote awareness, education, research and support for people with neutropenia and their families through a national resource network. Visit us online at neutropenianet.
About the Severe Chronic Neutropenia International Registry:
The Severe Chronic Neutropenia International Registry (SCNIR) was established in March 1994, in the United States (housed in the University of Washington), Australia, Canada, and the European Community. The SCNIR is directed by a scientific advisory board of physicians from around the world who care for SCN patients. The SCNIR mission is to establish a world-wide database of treatment and disease-related outcomes for persons diagnosed with SCN. Collection of this information will lead to improved medical care and is used for research to determine the causes of neutropenia. For more information:
depts.washington/registry; 800.726.4463.
More on SCN and the experts who serve this patient group …
Severe congenital neutropenia (SCN) proliferated international headlines when research from Laurence A. Boxer, MD, from the University of Michigan Pediatric Hematology/Oncology Department and colleagues from the University of Michigan and the Severe Chronic Neutropenia International Registry (SCNIR) were published in the May 2006 issue of the Journal of Pediatrics. The study investigates the cases of five children, from four different families, all of whom were conceived by in-vitro fertilization by donor insemination, and all have SCN.¹
Boxer, who serves as co-director of the SCNIR and is a pioneer of SCN, and his colleagues, stumbled across these findings due to several of the families seeking Boxer’s expertise on the rare disease (many of which attend the annual Neutropenia Family Conference).
Dr. Boxer, in interviews with the press, said that while he had no information about the donor, he and his colleagues suspect that the man had an unusual condition called mosaicism in which the mutant gene occurred only in his sperm and not in the rest of his body. If in fact he did have mosaicism, he would have shown no physical symptoms, Boxer pointed out.
According to a correction in the May 20, 2006 issue of the New York Times, the sperm bank says it is unable to get in touch with the donor because it no longer knows his whereabouts.
Citation: Boxer, LA. “Strong evidence for autosomal dominant inheritance of severe congenital neutropenia associated with ELA2 Mutations.” Journal of Pediatrics. Volume 148, Issue 5, 633-636 May 2006.
Other feature story angles:
1.) Dr. David C Dale is president of American College of Physicians and pioneer of research of severe chronic neutropenia – especially cyclic neutropenia. Dr. Dale “discovered” cyclic neutropenia through his original studies on canines [gray collie dogs] (for a list of his published studies on this topic:
en.scientificcommons/d_c_dale). Dr. Dale has led SCNIR out of the University of Washington, Seattle, since its inception 13 years ago.
2.) One Seattle family’s battle with this rare disease. In fact, the son was the first human subject to test the hypothesis of G-CSF to increase the neutrophil count in humans. G-CSF is a drug that now is used on every cancer patient and bone marrow transplant patient and is the only current drug that helps SCN patients. The drug is made by AMGEN; the company also initiated the Registry (SCNIR). Back to the son … the first dose of G-CSF was made of pooled blood products and this research was done in the 1980s – at the height of the AIDS scare. This mother’s story is amazing.
3.) Lee Reeves, president of the National Neutropenia Network, lost her daughter after a failed bone marrow transplant. Her daughter, Leta, had battled SCN her entire life and made it to age 20 when she developed leukemia. Researchers are finding that AML is becoming increasingly common in one subsection of this patient group. Lee now runs the NNN on a volunteer basis to help others dealing with what her family endured.
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