SHORT BOWEL SYNDROME FOUNDATION

Sixteen Years of Patient-Led Impact

Rooms that stayed open. Education people can use. A patient seat in work that used to happen without them.

2010Founded in Lincoln
501(c)(3)Public charity
10k+Community reach
UnpaidStaff and admins

01AdvocacyVoice in press, research, and adult systems
02CommunityPeer rooms, Hub, and daily education
03IndustryIndependent collaboration — never endorsement

TIMELINE

2010 Incorporated Dec 3
2011 501(c)(3) · first rooms
2012 GATTEX approved · Gutsy Grant
2013 New York Times · CenterWatch
2015 10 NORD meetings
2016 Grant ends · rooms stay
2024 Logo revamp
2025 PIF-ECHO
2026 Site rebuild · Connect planned

SBSF does not prescribe, refer, or sell a therapy. Open a section for the public record.

ADVOCACY
Putting adult experience in the room

Advocacy at SBSF is putting adult lived experience into rooms that used to run on pediatric data, marketing copy, or silence. Patients lead. Clinicians keep medical authority.

Making adult IF visibleNew York Times, Jan 31, 2013. Lincoln Journal Star, Sept 11, 2014. Early KOLN/KGIN 10/11 coverage from Lincoln.
Speaking where patients gatherTen NORD Short Bowel Syndrome patient meetings in 2015. Oley / ASPEN speaking in 2024.

A seat in research designPIF-ECHO pilot, Mount Sinai / Dr. Kishore Iyer, 2025–2026. Twelve live sessions for adults on HPN. Andy is a named co-author on the August 2026 medRxiv preprint.
Teaching the skillBeyond the Gut gives adults language for appointments, letters, second opinions, and system work that fits a real week.

Not advocacy: a logo on a therapy, a hospital ranking, or a promise that SBSF can change a coverage decision.

COMMUNITY
Official rooms and how they stay safe

Private Facebook spaces. New members answer entry questions and agree to the rules. Incomplete requests are declined with a note on how to fix them. Lived experience is welcome. Medical instructions are not.

Adult Support GroupWork, cyclic infusions, adult systems, long-term home nutrition support.
Families Support GroupParents and caregivers. School, growth, pediatric-to-adult handoffs.

Mental Health groupIsolation, body image, anxiety, coping. Peer space — not therapy.
International + therapiesGlobal access differences. GATTEX Support Group planned 2027 rename: SBS Developments and Therapies.

Request Support Group Access →

10k+ is a public reach figure across rooms, site, and years — not a paid membership roll.

COMMUNITY
Education people actually use

The Educational Hub is one door and four pillars.

UnderstandNEC, Hirschsprung’s, gastroschisis, Crohn’s, volvulus, ischemia, trauma
LiveMental health, work, identity, Beyond the Gut
TreatPathways, labs, medications, complications, transplant context
NourishPN, EN, home TPN, Centers map — not a ranking

G.U.T. Program · Our Stories – Our Strength · Volunteer

COMMUNITY
Gutsy Grant Award — history only
2012–15Years it ran
$500Each monthly award
12 / yrPeople awarded
48Awards in four years

Estimated split of 48 awards

Navy 75% — pediatric patients and mothers · Blue 25% — adults 18+

Funding ended in 2016. A future scholarship needs a new funder. There is no live apply button for a grant SBSF cannot pay.

INDUSTRY
Public record, 2011–2017

Andy served as Patient and Physician Communications Advisor while teduglutide (GATTEX) moved through NPS, NAIA, and Shire. FDA approved GATTEX in December 2012 for adults with SBS who need parenteral support. History — not a current retainer.

2011–2013 · NPSAdvisor years before and after adult approval. CenterWatch Weekly, Dec 9, 2013, recorded SBS Connections / SBS Match.
2014–2017 · Shire / NAIAContinuation of patient-advisor work after the GATTEX transition. Not an endorsement of the label.

CenterWatch page → · GATTEX education →

Past public funders: NPS (later Shire / Takeda), Shire, Zealand Pharma, NAIA. Current listed supporter: Jablonski Physics Services. Unsigned conversations are not listed as sponsorships.

INDUSTRY
Partner versus sponsor
Partner · no fee requiredA page on the site. Recognition on the Foundation Facebook page. Invitation into Connect or an education hour when the topic serves patients.
Sponsor · funds a programCommunity $2,500 · Mission $5,000 · Program $10,000 · Foundation $20,000+. Gift is tied to Hub, groups, clinicians, or adult living resources.

Not for sale: member lists, product posts inside private groups, preferred-pharmacy language, or a statement that SBSF recommends a drug, device, or hospital. No conference booths.

Corporate Sponsors → · Industry Partners → · For Clinicians →

CONTACT
Write the Foundation

Andrew E. Jablonski
Founder and Executive Director
Short Bowel Syndrome Foundation, Inc. · Lincoln, Nebraska
ajablonski@shortbowelfoundation.org
Contact form →

Medical note. Content on this site is educational. It is not a substitute for professional medical advice, diagnosis, or treatment.