aj-01Living with my condition short bowel syndrome (SBS) has affected my life in many different ways over the years — physically, emotionally and socially. They all have their positives and their negatives. These experiences – both positive and negative – were the driving force in establishing the Short Bowel Syndrome Foundation. Primarily, because I have an understanding of the core issues related to SBS – the need for education, support and advocacy in our community of patients and providers. The idea was to start a small, local organization and grow, but really the reverse happened in such a short amount of time. We started gaining a large following and interest in the condition. Unlike my family, who had to rely on limited knowledge of our healthcare providers, many of my supporters are experiencing the “infancy and toddler” years of SBS and receiving much needed peer support as well and help from the medical community.

Finding information about SBS when I wasn’t in a hospital proved challenging. And finding accurate information was even more daunting. In 2010, I was invited to join a small online support group for SBS. It started as a group of about 50-75 parents of SBS infants, toddlers and small children, looking to find someone more experienced in the lifestyle of the condition. I received masses of questions and it was clear to me that more support was needed. Thus, I started the Short Bowel Syndrome Foundation on December 3, 2010.

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