Short Bowel Syndrome Foundation, Inc. Pediatric & Families Support

05/11/2018

Calling all parents, kids, and teens! Want to help give back to the SBS community? We're looking for your input on a new medical product for pediatric short bowel syndrome. We are meeting with people nationwide and you will be compensated for your time! If you're interested in participating, email us at [email protected].

Tweets:
Parents of SBS kids/teens! Want to help make new treatments available to your kids? We need YOUR help. Email us at [email protected] for more info.

Give back to the SBS community! Help advance treatment of SBS by giving us feedback on a new product. Email us at [email protected] to participate.

Do you have kids with SBS? Let’s work together to help make new treatments available. We’re looking for your feedback on a new product. Email us at [email protected].

04/13/2017

Dear SBSF Member, Are you a parent, child, or teen? We would like to invite you to help us support the development of a new SBS patient-reported conclusion survey for patients diagnosed

04/13/2017

Dear SBSF Member,

Are you a parent, child, or teen? We would like to invite you to help us support the development of a new SBS patient-reported conclusion survey for patients diagnosed with short bowel syndrome (SBS) in the pediatric ages. We encourage the parents to fill out the survey as a proxy to their child or teen. Or supervise the child or teen if they want to do it themselves. All information will be private and the data will be used to contribute to the final report. No identifying questions will be asked of you, such as address, phone, email, if your filling out the survey please only put your last name and age range.

The target SBS sub-population is pediatric patients with intestinal failure that are dependent on parenteral support (we will create one for EN/HEN and with No PN/EN/HPN/HEN.

This new instrument developed by the Short Bowel Syndrome Foundation as an independent research study. There is no collaboration with outside companies or pharmaceuticals from the SBS Industry. The questions posted below aims to understand the impact SBS has on patients’ daily life. Given your background and experience of living with SBS, we would very much welcome your insights/input into the various aspects needed to be captured in this new SBS study we have created.

https://www.surveymonkey.com/r/26KD8WN

Web survey powered by SurveyMonkey.com. Create your own online survey now with SurveyMonkey's expert certified FREE templates.

02/21/2017

What are you doing for Rare Disease Day 2017!? Do you have an event planned or an event you plan on attending?! Hope all is well!

12/20/2016

http://shortbowelfoundation.org/meet-logan-a-short-bowel-hero/

They say timing is everything, and that couldn't be more true for my daughter Logan, and her new Short Bowel Syndrome Journey. In March 10th 2016, we welcomed our second child, JJ into the world. We were elated! Not only were over the moon for our son,

12/20/2016

http://shortbowelfoundation.org/sbsf-notice-of-confidentiality/

The Short Bowel Syndrome Foundation, Inc. Confidentiality Policy The Short Bowel Syndrome Foundation, Inc. is very protective of members’ right to privacy. All Members and patient information is held in the strictest of confidence like it is HIPPA (For information on HIPPA click here). Members

12/15/2016

The Short Bowel Syndrome Foundation, Inc. Confidentiality Policy

1.The Short Bowel Syndrome Foundation, Inc. is very protective of members’ right to privacy. All Members and patient information is held in the strictest of confidence like it is HIPPA. Members names, addresses, telephone numbers and other personal information will not be sold or shared with any company or organization for any reason. For safe-keeping the database is stored and protected within a computer firewall called Bullguard.

2.Envelopes, Letterhead, and Mailing labels are prepared in-house and sent via UPS for the purpose of sending the newsletter and other Short Bowel Foundation mailings. For UPS privacy statement click here.

3.When a member chooses to share contacting information by responding to a mailing, raffle or giveaway, our gutsy grant, survey, etc. Your information will remain private in-house and not shared in any way or fashion.

4. The Short Bowel Syndrome Foundation, Inc. will share a Members’ name and contacting information with other Members for networking purposes, but only after getting written and verbal consent from the Member(s) first. Members who have provided their names and contacting information on this web site will not be contacted for solicitation, marketing or research purposes. If you would like to participate in a research study please contact Andrew Jablonski for more information. We will never give out your name or other information without your knowledge and consent before hand.

If you have any questions or concerns, please contact us at anytime (402) 770-0554 or contact Andrew Jablonski at [email protected]

12/15/2016

2016 opened new doors and opportunities to grow! In 2017 we will grow further and wider to establish patient support in as many states as possible! Thanks for your continuing support this year we look forward to serving you in 2017!

12/15/2016

Those who we have met and helped throughout the years...

12/15/2016

Read one of our latest patient stories! Meet Aria, and her mom Rachel!

This is a story about one of our short gut families and their journey. This is Rachel and Aria's story! Hello my name is Rachel my daughters name is Aria she is about to be 8 months! I had a pretty normal pregnancy until my 22

11/18/2016

Hi everyone! The SBS Foundation needs your help and input. We have a goal to launch a program in 2017 to help AT LEAST 20 families throughout the country, with a minimum of $75 per month for 1 year to go towards helping provide nutrition; this would consist of food and drink of course. When we have the funds raised, there will be an application and criteria a family would have to fall under in order to qualify. We are here to help support you and we are SO excited to do so!!! We hope to be able to continue this program and have it grow each year to include more families. Given the amount of funds raised, we will rotate families year to year so eventually everyone has an opportunity to receive some help ❤️🙏🏼

How do you all feel about the program? Would this alleviate some financial stressors that come with Short Bowel Syndrome?

We are looking for 10-15 families/patients to please provide us with a very simple video saying thank you to our donors for helping make this possible!

Thank you so much for your input everyone! We value each and every one of you. Thank you for helping us, help you! ❌⭕️❌⭕️

11/17/2016

Hi Everyone!!! Please read:

The Short Bowel Syndrome Foundation is creating an awareness video!

Parents:

We would love for your participation! If you would like to be a part of our video, please submit a 2-3 minute (or shorter) video of your child introducing themselves and answering a couple questions (whether you are in the hospital, at home, or at the park!). For example, “My name is Anna, I am 4 years old, I have Short Bowel Syndrome and I am a fighter!”

Below is a list of questions your child can answer. They of course do not need to answer in exact order or even all of the questions! You can pick and choose as you feel comfortable.

1. What is your name?
2. I have SBS from… (older children may be able to answer this, younger ages may have a difficult time)
3. How do you eat?
4. What do you like to eat?
5. How do you describe Short Bowel Syndrome?
6. What do you want me to know about SBS?
7. What do you want to be when you grow up?
8. What is your favorite subject in school?


Parents & Adult Patients:

If you would like to participate, please send us a 2-3 minute video (or shorter) introducing yourselves and answering a few questions. For example, “My name is Mary and my son/daughter/I, has/have Short Bowel Syndrome”.

Below is a list of questions you can answer. You of course do not need to answer in exact order or even all of the questions! You can pick and choose as you feel comfortable.

1. How has SBS affected your life?
2. What do you want people to know about SBS?
3. How can you as a parent use help/support from the foundation (even financial)?


We will be piecing the videos together to make longer videos that have a variety of children/parents/patients involved. Besides awareness, this video will also help the foundation provide the support we all desperately need. Help us get the word out there! Thank you so much for your participation and we are looking forward to viewing your submissions! 😀🎉

Please send your video submissions to either:

[email protected] or [email protected]

*Any video submission is giving the Short Bowel Syndrome Foundation permission to use such video for awareness, promotion, and advertising purposes to benefit the SBS community