Established in December of 2010, the Short Bowel Syndrome (SBS) Foundation is a 501c3 public charity providing education, support and advocacy services to patients who suffer from this rare condition as well as caregivers and health care providers in gastroenterology. Founder and CEO, Andrew Jablonski, BA, ASS, has been deeply dedicated to building the Short Bowel Syndrome Foundatio01n in Lincoln as well as in his mission to educate our community and offer help to those who are suffering with SBS nationwide.
What would you consider to be at the center of your mission and work at the Short Bowel Syndrome Foundation? – We provide education, advocacy, and financial assistance to patients. This has helped many people and their families get out of foreclosures on their homes as well as paying for significant medical expenses. We also travel with the National Organization of Rare Disorders and speak at different patient meetings across the United States. So far in 2015 Short Bowel Syndrome Foundation has been to Chicago, Orlando, Denver, and later in June we are going to Pittsburgh and New York.
What do you like about having your foundation headquartered in Lincoln? – I like the business community and how there are many opportunities to become involved if you so choose. Everyone is very supportive when it comes to attending events and such. This last year the National Organization of Rare Diseases, along with the Short Bowel Syndrome Foundation, got approved for February 28th to be recognized as Rare Disease Day from Governor Ricketts.
What kind of community organizations/groups are you involved with?
– American Gastroenterological Association
– American Psychological Association
– National Organization of Rare Diseases
– Shire Pharmaceuticals (formally NPS Pharmaceuticals)
Do you have a philosophy or mission statement? – Empowering Patients to Live Fuller Lives. Creating a Lifeline of Hope.
What is one of the biggest challenges that the SBS Foundation has faced? – Finding funding sources to rely upon, as one of our biggest challenges is being as small of a foundation that we are due to the demographic we serve.
What has been the SBS Foundation’s most important achievement? – Getting FDA approval for GATTEX® in December of 2012, and then being featured on the front page of the New York Times Business Section with an article detailing our foundation’s collaboration with NPS Pharma to gain the drug’s approval.
And the biggest turning point? – Forming a partnership with NPS Pharmaceuticals in 2011, which continued up until 2015. Now they are Shire Pharmaceuticals and have new staff, so it’s like starting over brand new. I still retained one of my contacts from NPS, so there is a familiar face in the crowd yet.
What is the most unique or interesting thing about the SBS Foundation that most people don’t know? – Every patient is different; no two patients are the same. So everyone has a similar story, but it is also a very different journey for each individual. Also many people assume that an intestinal transplant would be an optimal solution but sadly it isn’t. The survival rate for intestinal transplants is low, and usually when you transplant the small bowel, you transplant the stomach and liver also (or what is called a multivercerical transplant).
What do you see happening with the SBS Foundation in the next five years? – There has been growing awareness and support in the Short Bowel community in recent years. I see the support groups still going strong, and the foundation if still funded will continue to do the work it has been doing, which would include putting on more fundraisers, speaking at different patient meetings, and providing support to new patients and their families.
To learn more about the Short Bowel Syndrome Foundation, please contact Andy Jablonski at (402) 770-0554, via email at shortbowelfoundation@gmail.com, visit the website at www.shortbowelfoundation.org, or connect on Facebook at facebook.com/SBSFoundation.