The guy that runs the admin page for SBSF on Facebook is the same guy that runs SBSF, I can tell by the pics he posts. He look's weird, and he gets a little too close to some of the kids he hangs out with by the looks of those pictures, if you know what I mean.?.?.. 1 star because more than likely this non-profit is a burnt out charity for the individual who maintains the "legitimacy" of the non-profit. They start a nonprofit, help a group they can relate to for a month, maybe a year to keep up the image, then they start pocketing all donations. If it's a non-profit, how is it his JOB according to his Facebook????? He pays himself with donations to the non-profit. I analyze non-profits for a living, and unless the non-profit is constantly growing at a significant pace, then chances are good that any donations made will go straight to whomever runs the non-profit. Once a non-profit stops growing, or becomes "dead", the founder has invested too much at that point, and now relies on donations personally. I have seen non-profits that look like a fortune 500 corporate empire on social media, and at the same time is being upheld by someone living in a garage with dirt floor via am old Motorla flip phone, it's all a sham. I'm not saying that's the case with SBSF, but I will say that in my experience of analyzing such non-profits, and I dont see any other recent evidence that would suggest otherwise, it certainly wouldn't be surprising!!!!!
Continues to help short bowel syndrome families and adults with support and education through social media and their website, which serves as a good reference tool for short bowel syndrome.
Knowing there's a support group available ONLINE that's dedicated specifically to the rare condition so appropriately named (Short Bowel Syndrome), has provided me with incalculable support & hope. On top of all the benefits available during challenging times, the SBS Foundation, Inc. provides me with immediate relief from worry/anxiety/etc. simply because I know it's 'here'!
For 44 years I never ever met, or even heard, of other people with SBS or SBS symptoms and my doctors were often at a loss on how to help me. Since birth I have had to deal with this disease with only the support of my mom who did her very best but couldn't understand why I never got better. In desperation we searched the internet for any kind of information on SBS and how to live with the symptoms, esp. the mental health aspects. Finding the Short Bowel Foundation's facebook support group for adults was a crucial turning point for myself and my family. Andy and the members of the group have provided me with the information and emotional support that I had been looking for all my life! The day I found the SBSF was one of the best days of my life! I have participated in many many health and support groups and the ones run by the SBSF are the best by far.
This group is a God send to the SBS patients. The group provides support and advice to suffers with no idea of where to turn. Members are generous with their personal stories...and compassion. No one offers solutions without advising the new patients talk to their Dr's. It is a friendly and welcoming group that opens their arms to new members, making them feel welcome.
Short Bowel Syndrome Foundation provides much hope to those with such a rare diagnosis. My son is now 12 with a very short gut and when you don't know anyone with the same condition having an organization such as this one gives you a sense of community.
I have had SBS since March 2010. Didn't know anything about short bowel or even that I should have. GI. I'm so thankful for SBSF and its support group, as I have learned so much about SBS and have taken information from it to pass on to my doctors. SBS is a lonely, hard thing to live with as most people (including medical people) have no idea how to treat us. This nonprofit is a godsend for putting us together with others who suffer with SBS.
My 3.6 year-old son has short bowel syndrome since birth. We were scared and isolated. We live in Italy and here we have nothing similar to Short Bowel Syndrome Foundation. When I found them online, they provided what we so desperately needed: information and connection to others who were going through something similar. Andy Jablonski's foundation and all the people involved gave us the most priceless gift: hope.
So great to have a foundation dedicated to the success of short bowel patients and their families! It has helped us and our son tremendously; with lots of support and thought provoking ideas to give our son the best possible care. Having a foundation for Short Bowel is VERY important to us! Here's a picture our our Short Bowel Son George. He's 2.5yrs old.
Hi! My name is Pilar and I am the mother of Albert, a seven year old boy who suffers from severe short bowel syndrome. We are from Barcelona (Spain). Albert is on TPN for 19 hours a day at the moment. He is a clever,active and happy guy who goes to school and does lots of things. Key, for us has always been what he eats orally. We control sugar in all its forms and carbs. His nutrition is based on healthy fats and vitamins plus a bit of fibre. For us SBSF has been great help and support through the years. I met Andy when Albert just left hospital after spending there 9 months (he got NEC at six days of birth) and he has always been there for us to give us advise and comfort. I think this foundation is an awesome project which helps lots of people from all around the world that get connected through it. Here, in Spain we don't have a foundation like this and I am dreaming someday we can work together and build a Spanish branch of this wonderful project.
I've had SBS for 5yrs after seatbelt trauma in a car crash. I found plenty of information and support for having a stoma but little to none for an adult with SBS. I came across the Foundation through a FB friend and the advice and support has been invaluable. You realise you aren't on your own and regardless of how you came to have SBS there is always someone managing the issues you are struggling with. This is a wonderful group of people who share their greatest fears and the funniest toilet humour!
My granddaughter Aria was born April the 9th 2016. 2 days after she was born she had surgery for a bowel obstruction. When the surgeon went to do her surgery he discovered that 95 percent of Aria's small intestine had died. She stayed in the hospital in Austin. When she was released from the hospital she went home with a central line for TPN, had a Stoma for her feedings and G button for bile output. In August she went to Omaha Nebraska for a bowel reconnection. Dr . Mercer was able to reconnect her with 8 cm of small intestine. She's back home now in Waco Texas. She has a G button and her central line for TPN and Omegaven. She's doing amazing. My daughter (Aria's mama ) and myself have learned a lot from her journey. We are on the Short Bowel Support Foundation page and it's been a great support for our family. #SBSAWARENESS2016
When I found out I had short bowel syndrome I felt so alone, I knew no one who had it. I had been through cancer, had chemo and radio therapy which caused radiation proctitis and my bowel kinked and melted together. So I was given an ileostomy bag and put on Iv fluids. I had so many questions. The short bowel foundation made it possible for me to have all those questions I had answered by people who knew exactly what I was going through. I don't feel alone any more because Iv made the kindest of people I now call friends, my rocks.
When I found SBSF, I realized there's more people out there going through similar problems as me! I've had short bowel since 1994, when I was 30 years old. Keep up the good work!
As a mom of a child living with short gut, I find this organization to be an amazing way to connect with others. Any information provided is helpful. The foundation's mission to raise awareness for the short gut community is amazing.
I would be lost without the support group SBSF has for us. I've learned so much from everyone and don't feel alone anymore. The extra help Andy puts into this foundation and keeping us fellow sbs people up to date is greatly appreciated. He's very good at what he does.
We finally have an organization to create awareness and raise money for Short Bowel Syndrome. As a parent of a SBS child, I find having these organizations important to bring other grieving families together. These children have a "hidden illness", where this syndrome seems to go unnoticed. Thank you for helping the SBS community!
The short bowel foundation has helped me to reach out to others that have this disease. Before I joined this group I felt very alone. I am new to the group, but right away I met 2 of the members in person! They were so wonderful and I feel very lucky to have found this valuable resource.
The Short Bowel Syndrome Foundation has helped my family and I for the past four years with their support emotionally and financially. They are an amazing resource and I am beyond thankful for them.
I have had Short Bowel Syndrome for about 8-9 yrs now. It's been about 3-5 yrs that I've been a member of the Facebook SBSF support group. It has been a true life saver. I've learned so much about SBS from this support group. I have made many many friends who share this illness. SBSF has shown me I'm not alone, it's helped me learn about SBS how to manage better. It has been there for me on bad days and on good days. I am so thankful to have this kind of support.
I felt so alone. Having never heard of Short Bowel or knowing anyone who had it. I came across this group by accident and it has helped me to learn about my illness and to know that I'm not alone. The group is my lifeline. We can talk to each other without fear and know that somebody in the group has probably been where you are. I don't know where I would be today without the help of this foundation.
This is an amazing organization. Having SBS is devastating. My doctors were unfamiliar with it. Finding this group was such a help for me. It helped for me to pass information on to my doctors as well. We are learning together with help from the foundation.
Fantastic organization doing amazing work. Prompt, receptive and caring. Always looking for innovations and partnerships to best suite their patient and research base.