Team IBDKids is providing the following information to give you some background on pediatric IBD and the work your fundraising will support at the Children’s IBD Center.  Feel free to use this information when composing the text for your fundraising web page and messages to your donors.

Approximately one and a half million Americans suffer from IBD.  20% are diagnosed as children.

Crohn’s disease and ulcerative colitis are the two illnesses known as inflammatory bowel disease or IBD.  Both illnesses tend to strike during childhood at an average age of 12.  About 10% of children in our Center have been diagnosed before 5 years of age.

The Children’s IBD Center at Mount Sinai was created to provide comprehensive, state-of-the-art and compassionate care to children and teens with inflammatory bowel disease and their families.  We make a commitment to help any child with IBD, even if their family is unable to pay for their care.

“I know of no other center that resembles what we have put together in our mission to provide comprehensive, state-of-the-art and compassionate care to children and families with ulcerative colitis and Crohn’s disease, regardless of their ability to pay, while advancing the understanding of the disease through research and education.”

-Keith Benkov, MD
Director of the Children’s IBD Center

2012 is the seventh year in a row that Team IBDKids is running the New York City Marathon and each year the Medical Director of the Children’s IBD Center, Dr. Keith Benkov, leads the team by running the Marathon himself.  The money Team IBDKids raises is used to support research and care at the Children’s IBD Center at Mount Sinai.

Programs supported by Marathon fundraising:

• IBD Chat – A support group for children and teens with IBD and their siblings run by Bambi Fisher, social worker; Yuki Takahashi, child life specialist; and Clare Ceballos, nurse practitioner.
• IBD Parent Chat – A support group for parents by parents with topics of interest to families of children and teens with IBD
• Family Friends – A program that matches trained volunteer parents with families newly diagnosed with IBD or undergoing a treatment change or surgery
• Lecture Series – Lectures are given regularly on topics relevant to families who have a child with IBD
• Web Site, www.ibdkids.org – The web site has many features.  Articles about inflammatory bowel disease include basic introductions and explanations of Crohn’s disease and ulcerative colitis as well as more in-depth discussions of the diseases and new and developing therapies.  A summary of lectures that have been presented at the Center lecture series is also available.
• Newsletter - A newsletter featuring articles about IBD, news on upcoming events and stories from patients; newsletters are mailed to families and posted on the website.

Research supported by Marathon fundraising:

• Chinese Herbal Medicine (FAHF-2) For Crohn’s Disease (Ages 6-21) – The purpose of this study is to determine the effectiveness of an Herbal formula (FAHF-2) for the treatment of Crohn’s disease.  This is a laboratory study looking to see how blood and colon tissue cells of children with Crohn’s disease, ulcerative colitis or neither react to this herbal formula.

• Treatment of Anxiety for Children and Adolescents with Inflammatory Bowel Disease (Ages 8-17) – The purpose of this study is to evaluate the effectiveness of a cognitive-behavioral intervention program for anxious children and adolescents with IBD compared to a supportive non-intervention program.  This study includes sessions with a child psychologist at the Children’s IBD Center.  The study goal is to reduce anxiety symptom severity and IBD symptoms, as well as improve quality of life, medical management, appropriate health service utilization, and school and general functioning.

• Growth Study – This study is being done to see if the height of children with Crohn’s disease differs from normal standards and what factors, if any, are related to decreased height.  Focus is on disease presentation, disease location, medications, surgeries, parental heights and how these are correlated to the child’s height.  This study branches off to two studies, one looking at all of the children and another looking at those children over 18 years old who have already achieved their adult height.

• 6-Mercatopurine Study – The purpose of this study is to help us learn if there are infections associated with the use of 6-Mercaptopurine.  This study looks at children who have been on this medication long term to see if there is an association between the medication, routine blood tests and infection.

• Methotrexate and IBD – The purpose of this study is to look at the clinical outcome of pediatric patients with Inflammatory Bowel Disease which includes Crohn’s disease and ulcerative colitis on methotrexate.  The study is looking to see if methotrexate (an immunomodulator) is a well tolerated, reasonable alternate to other immunomodulators used for the treatment of IBD.

• Genetic Study – The purpose of this study is to identify whether established genetic markers, individually or combined, are predictive of disease behavior in a well characterized population of pediatric Crohn’s disease.  We hypothesize that children with more severe disease will carry a higher number of susceptibility loci.  The ability to identify markers predictive of disease severity would empower clinicians to start appropriate treatment early in the disease course.  Establishing a genotype-phenotype association specific to pediatric Crohn’s disease will aid in driving management from the onset of the disease.