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WHAT IS HIRSCHSPRUNG'S


Hirschsprung Disease occurs when nerve cells (also called ganglion cells) are absent from the lower part of the colon. The segment without nerve cells is called the aganglionic segment and it always starts at the bottom of the colon affecting the lower end. It can also extend up the colon, even into the small intestine. The absence of ganglion cells leaves a portion of the colon essentially paralyzed and unable to propel waste products along its length. This is the reason why babies born with Hirschsprung’s disease are often unable to
pass their first “meconium” stool and children diagnosed later in life have severe constipation. In addition to having difficulty passing
stool, infants and children with Hirschsprung’s disease also typically have abdominal distension and sometimes develop vomiting and
loss of appetite.

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WHAT IS HIRSCHSPRUNG'S


Hirschsprung Disease occurs when nerve cells (also called ganglion cells) are absent from the lower part of the colon. The segment without nerve cells is called the aganglionic segment and it always starts at the bottom of the colon affecting the lower end. It can also extend up the colon, even into the small intestine. The absence of ganglion cells leaves a portion of the colon essentially paralyzed and unable to propel waste products along its length. This is the reason why babies born with Hirschsprung’s disease are often unable to
pass their first “meconium” stool and children diagnosed later in life have severe constipation. In addition to having difficulty passing
stool, infants and children with Hirschsprung’s disease also typically have abdominal distension and sometimes develop vomiting and
loss of appetite.

WHAT CAUSES IT?

Hirschsprung’s disease is caused by the failure of nerve cells to reach the bottom end of the colon.

These nerve cells develop very early on in the embryo. These cells migrate through esophagus making a long journey along the intestinal tract to get to the stomach, small intestine and finally the colon. Many genes are required to make this migratory journey possible and if any of these genes function abnormally, then the nerve cells are unable to complete their journey, leaving the lower part of the colon aganglionic and unable to function normally.

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How is it diagnosed?


If you have concerns, your doctor can order a contrast enema.

How is it diagnosed?


If you have concerns, your doctor can order a contrast enema.

contrast enema x-ray

A contrast enema is a radiological study where a doctor inserts a rectal catheter, injects "contrast" fluid and takes x-rays of the abdomen. 

The only way to get a definitive diagnosis is through a rectum biopsy. This painless procedure is generally performed without anesthesia. A pathologist examines the biopsy to search for nerve cells - of none are present, Hirschsprung's Disease is diagnosed.

About REACH


REACH was established in 2011 by the Schnadig family. Their youngest son Adrien has total colonic Hirschsprung's Disease and Down's Syndrome.

About REACH


REACH was established in 2011 by the Schnadig family. Their youngest son Adrien has total colonic Hirschsprung's Disease and Down's Syndrome.

The Schnadig family wanted to help Adrien and other children living with Hirschsprung's Disease.

Adrien is doing well. Of course, he still has setbacks with bowel function.

Together with Dr. Allan Goldstein—a pediatric surgeon at Massachusetts General Hospital in Boston—the Schnadigs established REACH as a non-profit organization committed to improving the lives of children and families living with Hirschsprung’s Disease.

Meet the board members.


Meet the board members.


Eric Schnadig

Eric Schnadig

Founder & Chairman

Eric Schnadig is married to Isabelle and the father of four children. Adrien, their youngest, has Downs Syndrome and total colonic Hirschsprung’s Disease. Eric is CEO of Tervela Inc., a Boston-based high-tech startup. Eric and Isabelle founded REACH after experiencing a need for resources as parents wanting to learn more about the disease and its complications. 

Allan Goldstein

Allan Goldstein, MD

President

Dr. Allan Goldstein is Associate Professor of Surgery at Harvard Medical School and a pediatric surgeon at Massachusetts General Hospital where he directs the Pediatric Neurogastroentorology Program. He has a special interest in the care of children with Hirschsprung’s Disease and leads an active research program that studies causes, complications and treatments for Hirschsprung’s Disease. Married since 1994, Allan and Rachel have three children and live in Newtown, MA.

Isabelle Schnadig

Isabelle Schnadig

Founder & Vice President, Treasurer

Isabelle Schnadig is mother to four children. Married to Eric, their youngest son Adrien, born in 2006, was diagnosed with total colonic Hirschsprung’s Disease at five days old. Originally from Grenoble, France, Isabelle is a former economist who excels in the arts and has a passion for painting. Isabelle and her husband are committed to sharing their family’s experience in navigating and coping with this “silent disease.”

Liz Crawford

Liz Crawford

Vice President, Marketing & Communications

Liz is the mother of two. Her youngest child Malachi was born with Hirschsprung’s disease in 2008. Liz became involved with REACH in 2011 after launching the social media site, Hirschsprung’s Community, as a support forum for families living with HD. Liz is the CEO of Swish Productions, a fashion marketing and communications agency, as well as Swish Model Management.

Tory Hueston

Tory Hueston

Community Ambassador

Tory has two children. Her son, Avery, was diagnosed with total colonic Hirschsprung’s Disease at 20 days old, and she had a newborn brother who died of complications from HD. A Physical Therapist, an Athletic Trainer and owner of Matrix Sports Medicine & Physical Therapy, Inc. (North Smithfield, RI), Tory and her wife Bridget are committed to raising funds and awareness for HD. Tory established the Avery Kent Classic, an annual golf tournament that has consistently raised more than $20,000 annually for REACH.

Jacob Langer

Jacob Langer

Toronto, ON Sick Kids Hospital

Dr. Jacob C. Langer came on board in 2016 with REACH lending his skills in clinical and research with interests including neonatal and fetal surgery, minimally invasive paediatric surgery, and the management of complicated gastrointestinal problems in children. He is considered an international expert on the management of Hirschsprung's disease.  He has written 300 papers and 70 book chapters, and travels extensively internationally to do operations and to lecture on these and other topics.