By Susan B. Conley, MD, and Erin Shirley

The Nephkids e-mail listserv group and Web site were started in January of 1998. The listserv is comprised of concerned family members, patients and medical care givers whose common goal is to share information and experiences that may benefit children and adolescents who have kidney disease. The group has an open policy; families, older adolescent patients, physicians, nurses and other members of the care team are invited to join. The group generates an average of about 40 e-mail messages a week, which are distributed to members as they are posted, or in digest-form, every day or so, depending on volume of mail at the time. Messages deal with medical information, individual experiences which help others to know they are not alone caring for a child with kidney disease, and discuss the emotional side of dealing with kidney disease within the family.

Parents from around the world belong to the group, and it is amazing how similar experiences and feelings are universal. One father from Korea is very active in the group and has two young children, both of whom are doing well after kidney transplantation. He was the donor for one of the children, and has amazing insight and perspective on how this affects children and families.  Parents from the U.S. , Canada , England , New Zealand , Scotland , India , Korea and other countries are active in the group.

The Nephkids e-mail listserv group is watched over by Dr. Susan Conley of Philadelphia . Dr. Conley is a pediatric nephrologist with over 27 years of experience in the field. Her special interests include nutrition in renal disease and transplantation. In Dr. Conley’s words, "There is incredible expertise and experience in the members of this group. We have a wonderful group of parents with a wealth of experience dealing with kidney disease. Their cumulative wisdom is impressive, and they have many helpful hints and words of wisdom, besides just being able to offer support from someone who has also been there." Dr. Conley assists the group in utilizing all available resources. She encourages others in the medical community to give their perspectives as well. Dr. Conley is currently assisted by Dr. Melissa Gregory of Ann Arbor , Michigan .

The listserv is generously housed by the University of Alberta in Edmonton , Alberta , Canada , and is the result of the National Kidney Foundation, Dr. Kim Solenz of the University of Alberta in Edmonton and the pediatric nephrology community to help patients and their families.

The Nephkids Web site was started by "neph-parent" Stacy Jedynak who graciously gave of his time as a Web designer. He worked with Dr. Conley and others to form the beginnings of a very informative and ever-evolving Web site. Today’s Nephkids Web site is a gold mine of information for parents on the many aspects of pediatric kidney disease. Some of the topics that are discussed are: general information on the kidneys, urinary tract infections, nephrotic syndrome, glomerular diseases, congenital renal diseases, transplantation, dialysis, renal failure, growth, nutrition and Medicare. The Web site includes a glossary and a very extensive links page. Future additions will include: valuable posts by nephkids parents (neph-parents), discussion topics and coverage of additional kidney conditions.

Instructions on how to join the e-mail listserv group can be found on the home page. E-mail links to request any needed assistance regarding how to join or participate in the group are also available on the home page of the Web site, just click here. The Web site is currently managed by another "neph-parent”, Erin Shirley. Mrs. Shirley is also a volunteer administrator on the e-mail group and is assisted by neph-parents Mrs. Amy Hatton and Mrs. Susan Valle.

Susan B. Conley, MD, is Chief of the Section of Nephrology at the St. Christopher's Hospital for Children and Professor of Pediatrics at Drexel University School of Medicine (formerly MCP Hahnemann U School of Medicine). Erin Shirley is a parent from Metairie , Louisiana , whose son was diagnosed with bilateral renal dyslpasia and secondary bilateral reflux nephropathy at twelve-years-old.  

This article originally appeared in the March 2003 issue of aakpRENALIFE, Vol. 18, No. 5.

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