The Short Bowel Syndrome Foundation, Inc.

The Short Bowel Syndrome Foundation, Inc. (SBSF) stands as a global beacon of hope, connection, and empowerment for individuals, caregivers, and medical professionals navigating the complexities of Short Bowel Syndrome (SBS).

Founded in December 2010 by lifelong SBS patient Andrew “Andy” Jablonski in Lincoln, Nebraska, SBSF was built on a deeply personal vision: to ensure that no one ever has to face intestinal failure in isolation. What began as a local grassroots initiative has evolved into a international advocacy and support organization, bridging the gap between clinical data and the human experience.

🚀 Our Core Mission & Vision

The foundation’s primary mission is to empower individuals affected by SBS through comprehensive education, dedicated support channels, and life-sustaining resources. We aim to cultivate a highly informed, deeply connected global community where patients don’t just survive, but truly live fuller, more vibrant lives.

As we look toward the future, our vision stretches far beyond regional borders. We are committed to rare diseases, driving policy changes, accelerating clinical advancements, and inspiring resilience on an international scale.

📚 Empowerment Through Education

At SBSF, our commitment to patient-centric education is unwavering. Short Bowel Syndrome is a highly complex, individualized condition that demands expert navigation. By translating dense medical literature into clear, actionable resources, we equip families with the structural knowledge necessary to confidently manage daily care.

Our educational initiatives cover critical milestones, including:

  • Navigating advanced home infusion and Parenteral Nutrition (PN/TPN) therapies.

  • Understanding intestinal failure-associated complications and metabolic changes.

  • Evaluating modern prescription therapies engineered to stimulate intestinal adaptation.

  • Transitioning care to high-volume, specialized Intestinal Rehabilitation and Transplant Centers.

👥 Diverse Support for a Diverse Community

Every anatomical journey is unique, and the emotional toll of SBS shapes families differently. Recognizing that a one-size-fits-all approach cannot address the distinct social and psychological challenges our members face, SBSF proudly facilitates a varied matrix of peer-led networks.

From an intimate digital footprint, our global membership has expanded exponentially, proudly uniting over 20,000 individuals worldwide. We host tailored, secure spaces designed to offer solace and understanding to specific demographics, including:

  • Adult Patient Forums: Navigating employment, mental health, and long-term compliance.

  • Family & Caregiver Networks: Supporting parents managing pediatric growth milestones.

  • International Chapters: Navigating localized healthcare systems and therapy equity.

  • Targeted Peer Brackets: Dedicated breakout groups specifically for fathers, single parents, and siblings impacted by chronic illness.

🔬 Collaboration with Industry Experts

In our relentless quest to elevate standard-of-care practices, SBSF plays an active, vital role within the broader scientific and medical communities. We serve as a primary consulting liaison to pharmaceutical innovators, bio-tech researchers, and clinical advisory boards dedicated to orphan-drug development.

By injecting the raw, lived reality of the patient experience into early-stage research, our collaborative efforts help shape the design of clinical trials, maximize patient accessibility to novel therapeutics, and accelerate breakthrough treatments for short bowel therapy.

🎤 A Powerful Voice for the Rare Disease Community

SBSF does not sit quietly on the sidelines. We consistently lend our voice and collective expertise to global platforms to challenge misconceptions surrounding intestinal failure.

Our advocacy leadership actively manifests through a wide array of public engagements:

  • Pharmaceutical Consultations: Educating drug developers on the daily burdens of infusion therapy and fluid management.

  • Scientific Symposiums & Conferences: Presenting the patient perspective to roomfuls of gastroenterologists, colorectal surgeons, and home-health executives.

  • Organized Patient Meetings: Hosting collaborative seminars where families can interact directly with leading medical innovators.

🔗 Connect With Our Movement

The rapid expansion of our foundation is a direct reflection of the strength and resilience of the community we proudly represent. Whether you are a newly diagnosed patient searching for answers, a caregiver seeking an empathetic ear, or a healthcare provider wanting to understand your patients better—our doors are open.

Welcome to your sanctuary of support. Together, we are altering the landscape of Short Bowel Syndrome.