The Short Bowel Syndrome Foundation for Children of New England, Inc. (SBSNE, Inc.) is a 501(c)(3) non-profit charitable organization which was created to provide family support for children afflicted with gastrointestinal conditions, birth defects, and diseases which have led to Short Bowel Syndrome (SBS) and their healthcare providers.

SBSNE, Inc. has been created to promote awareness, provide parent-to-parent, financial, and educational support for families who have children who have been diagnosed with Short Bowel Syndrome, as well as providing at least 10% of all monies brought in to various researchers who are investigating the birth defects leading to and causes of Short Bowel Syndrome.

  Events! 

SBSNE, Inc. 5K  Run/Walk

When: June 24, 2017

Where: Carousel Village at Roger Williams Park, Providence, Rhode Island

Purpose: To help provide SBS families with a stipend for nutritional purposes to help ease this financial stressor which comes with the condition.

Cost:

Adults - $25.00 with t-shirt 

Children 2yr-10yr - $15.00 with t-shirt

Virtual Participant - $25.00 with t-shirt

SBS Parent/Guardian - $10.00

SBS Child - $5.00

*Registration will be $30.00 after May 1st.  We cannot guarentee t-shirt availability after June 1st.

Register: 

https://www.raceentry.com/races/sbsne-5k-runwalk-/2017/register

Verify Registration:

https://www.raceentry.com/races/sbsne-5k-runwalk-/2017/verify-registration

Volunteer: 

https://www.raceentry.com/races/sbsne-5k-runwalk-/2017/volunteers/register

Donate to the 5K: 

https://www.raceentry.com/races/sbsne-5k-runwalk-/2017/register/charity/standalone

Participant Self-Management:

https://www.raceentry.com/races/sbsne-5k-runwalk-/2017/runner

*If you cannot attend the walk due to distance, another obligation, etc., please join us virtually! 

Announcements

http://angelflighteast.org/passengers/how-it-works/

We are proud to annouce our partnership with Angel Flight East (AFE), a 501(C)(3) nonprofit organization dedicated to serving the community by facilitating free air transportation for children and adults with medical conditions who need to get to treatment far from home.

AFE serves the Northeastern region of the United States, and for destinations beyond our reach, we link with other volunteer pilot organizations. Anyone who requests a flight must be medically stable, able to board an aircraft, and fly in a small non-pressurized aircraft. Volunteer pilots use their own aircraft to fly patients to their destinations. These men and women pay for all expenses for each mission they fly. Most AFE patients require air transportation numerous times over several years for treatment of and follow-up for their conditions including, but not limited to:

• Burn Treatment
• Chemotherapy
• Eye Conditions
• Specialized care for chronic congenital conditions or rare diseases
• Much more!

We are pleased to announce the launch of the Natural History Registry for Necrotizing Enterocolitis (NEC Registry), a collaborative effort between The Morgan Leary Vaughan Fund (Morgan's Fund) and the National Organization for Rare Disorders (NORD) to study Necrotizing Enterocolitis (NEC). Morgan's Fund was selected by NORD to create the NEC Registry as part of a cooperative project between NORD and the U.S. Food and Drug Administration (FDA) that supports research on rare diseases and how they progress over time—natural history studies.  For more information, please visit our Partners page and visit:  https://www.necregistry.org/Home/About

 http://www.morgansfund.org/

 Prolacta Bioscience is a privately held, life sciences company dedicated to improving the quality of life in the most fragile infants through the harmony of nature and science. They create specialty formulations made from human milk for the nutritional needs of premature infants in neonatal intensive care units (NICU). These formulations are sold to NICUs around the country.

 Prolacta Bioscience's mission is to make a meaningful difference in the lives of thousands of the most vulnerable infants through world class research and innovative products.

To be announced...

Short Bowel Syndrome Awareness Month 

Educational/Support Meetings