Ajablonski23

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So far Ajablonski23 has created 96 blog entries.

Naia Rare Diseases Forms Scientific Advisory Board Comprised of Internationally Renowned Experts and Scientists

Naia Rare Diseases Inc, a subsidiary of Naia Limited, Forms Scientific Advisory Board Comprised of Internationally Renowned Experts and Scientists — Company Appoints Advisor of Patient and Physician Relations — RICHMOND, Calif., January 7, 2016 – Naia Limited, an international drug development company today announced that its subsidiary, Naia Rare Diseases, has formed a Scientific [...]

Cupcake Dream Motivates Doctor

Butler County boy's cupcake dream motivates doctor By Luis Fábregas | Monday, May 21, 2012, 11:47 p.m. Austin Rath is almost 6 years old and never has had a drink of water. He hasn't eaten a cupcake, either. The kindergartner from Renfrew in Butler County lost about 90 percent of his intestines shortly after birth because [...]

CenterWatch Weekly Article: SBSF and NPS Pharma Partner on New Project

SBS Foundation & NPS Pharmaceuticals partner to connect, and eventually recruit, patients CenterWatch Weekly, December 9, 2013 The Short Bowel Syndrome Foundation (SBSF), a nonprofit group that worked with industry leaders to support NPS Pharmaceuticals in gaining FDA approval for its drug Gattex last year, now is undertaking a new project that will be a [...]

Joshua

Joshua's still our "Little Trooper," taking one day at a time. Today he's off all enteral and IV nutrition completely! Our world as we knew it changed completely when his surgeon closed his g-button site in 2014. At nearly ten, he is still receiving nightly growth hormone injections and takes lots of supplements daily. Proper [...]

Vinnie

Vinnie is doing well. After suffering his first transplant rejection January of 2015 and taking most of the year to recover from it, so far 2016 is proving to be a healthier, happier year! This year we will celebrate his 5 year transplant anniversary of receiving a small bowel! He is doing great in kindergarten, [...]

Kyrie

This past year has been great for Kyrie! The best yet. In June, Kyrie started feeding therapy and a blended bolus diet, both of which has been a great success. Kyrie now eats (tiny bits) by mouth and is handling more feed than ever! Kyrie is still on TPN 10hours a day. He was on [...]

Caleb

Story coming soon!

Riley

Story coming soon!

Continuing Andrew’s Story

Andrews update is that he is now 15 years old.  G-tube feedings are 12 hours a day.  He attends high school and is in the drum line in band. He became much more social after discontinuing feeds during school hours, & upon starting high school. Previously, enteral feeds were run 24 hours a day.  Suddenly, [...]

Making ‘Every Patient Counts’ a Business Imperative

Check out the New York Times article on Andy Jablonski, his disease, and his great cause here: http://www.nytimes.com/2013/01/31/business/orphan-drugs-for-rare-diseases-gain-popularity-with-pharmaceutical-companies.html?_r=0

Kayden

We have some new warriors following so I wanted to update and introduce kayden. Kayden is an x 34 weeker weighing in at 4 lbs with his intestines on the outside of his body. Kayden was immediately taking to his first surgery at 3 minutes old, and we got the hardest question ever asked of us. [...]

The Voss Award

The Voss Award (Two Tickets to the Lincoln Stars Hockey Team and Parking Pass) Hi! I am Andrew Voss.  I am a happy, and active 11 year- old boy with short bowel syndrome. Here’s how it all started…  In 2001, I was born with volvulus, or twisted intestines as my doctor explained.  Due to the lack of [...]

Cody – Gutsy Grant Award

My name is Cody Wilson. I was born in Seattle, Washington on May 27, 1992. Life for me was hard from the beginning. Being born 9 weeks early saved my life. The doctor found I had developed Necrotising Enterocolitis and before I knew it, I was in surgery. They removed approximately 2 feet of my [...]

Owen – Gutsy Grant Award

Owen has had three surgeries: jejunal resection for an atresia on day 2 of life, another resection with jejunostomy/fistula placement on 10/05/12 for a total bowel volvulus and ostomy takedown and further resection on 01/08/13. After his three surgeries, he was left with 30 cm of small bowel. He is currently on TPN for 16 [...]

Tony – Gutsy Grant Award

Our brother Tony is 7 years old and 2 1/2 years later he has been waiting for transplant. Tony is need of a stomach & total intestinal transplant and the longer his wait he will also receive liver transplant. He was born with Total Colonic Hirschsprung's Disease. It affects his digestive tract that doesn't allow him to eat or go [...]

Joel – Gutsy Grant Award

Joel Vickoren was born with SBS with an underlining syndrome called Digeorge syndrome.  Joel spent three months in the NICU after he was born, and ended up losing all but 10 cm of his small bowel due to a midgut volvulus and jejunal atresia. The Vickoren family has endured hardships they never thought were possible, [...]

Austin’s Cupcake Fund

  Austin was born with less than 10% of his intestine functioning. As a result, he has Short Gut Syndrome. He is dependent on TPN for nutrition and hydration. This requires that he's is hooked up to an IV at least 17 hours a day. There are many serious medical complications associated with Short Gut [...]

Tony’s Fundraisers

UPCOMING EVENTS: ON-GOING-online donations through PAYPAL Antonio Forte Transplant Fund Trust You can donate to Tony's cause to the SBS Foundation. Click on the Donate tab on the right hand side of the page and in the notes section insert "Forte Donation".   2nd FRIDAYS:If you will be in Lititz, PA. Stop by McElroy's Pharmacy on [...]

Antonio Forte Transplant Fund Trust

Our brother Tony is 7 years old and 2 1/2 years later he has been waiting for transplant. Tony is need of a stomach & total intestinal transplant and the longer his wait he will also receive liver transplant. He was born with Total Colonic Hirschsprung's Disease. It affects his digestive tract that doesn't allow him to eat or go [...]

Joshua

Joshua Southern was born April 28, 2006 with gastroschisis. Gastroschisis is a birth defect in which part of the intestines have "ruptured" through the abdomen wall. Within hours of birth the majority of Joshua's small bowel had died and was removed. Multiple surgeries and setbacks awaited us the first part of his critical life. It [...]