Robbie's Rainbow

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Robbie's Rainbow

We are a registered Canadian charity.

Robbie’s Rainbow is a registered children’s charity dedicated to improving the health and quality of life of children and families living with digestive diseases.

05/30/2023

Attention, all superhero parents of young adults living with Inflammatory Bowel Disease (IBD)! Prepare to level up your support game as we guide you through the exciting transition from pediatric to adult IBD care. Mark your calendars for Wednesday, May 31st at 7:00 PM (EST), the YACCC is delivering an educational session "Transition: Empowering Teens Through Adult Care". Guest presenters are nurse practitioner Karen Frost, MN, NP from SickKids, and the one-and-only parent extraordinaire, Kate Murray, who has conquered the challenges alongside her teen. They've got the knowledge and experience to share!

Don't miss this chance to empower yourself and be the ultimate support system for your teen. Together, let's conquer the world of IBD transitions!

Registration Link: https://lnkd.in/gqmBW8jx
Question Submission Form: https://lnkd.in/gHdivf_N

06/16/2022

Teenagers with IBD often have a difficult time transitioning from pediatric care to adult care, which typically happens around the age of 18. A new study explores a way to improve transition using a biopsychosocial approach, with a specific goal of improving patient function, transition readiness, and outcomes among transitioning adolescents and young adult patients with IBD being cared for at pediatric centres in Canada. This is an exciting initiative that will help improve care for teenagers with IBD at this challenging juncture in their lives.

Read more in this excellent article co-written by a number of Robbie’s Rainbow’s medical expert collaborators: https://bmcgastroenterol.biomedcentral.com/articles/10.1186/s12876-022-02307-9

06/09/2022

When it comes to monitoring IBD in pediatric care, new research findings suggest that intestinal ultrasound use could be a new best practice. The research shows that ultrasounds can identify patients with endoscopic recurrence and possibly predict disease outcomes and treatment response.

“This is a noninvasive tool that’s more accurate than the standard biomarkers or clinical symptoms, and we use it regularly at the point of care without needing patients to fast, without any preparation, and in five minutes we can see if there’s Crohn’s disease recurrence,” said Michael Dolinger, MD, MBA, an advanced pediatric IBD fellow at the Susan and Leonard Feinstein IBD Clinical Center at Mount Sinai.

Learn more here: https://www.gastroendonews.com/Inflammatory-Bowel-Disease/Article/05-22/Ultrasound-IBD/66851

06/02/2022

As we shared last week, stress and IBD are intricately linked — and this can be challenging for children diagnosed with a digestive disease.

However, a fascinating new study has shone new light on the connection, and showed that a clear mind can lead to a happy colon. In other words, the connection goes both ways. Not only does an IBD diagnosis contribute to psychological stress, but psychological stress can have a detrimental effect on individuals diagnosed with IBD. As such, lowering an individual’s psychological stress could help improve the outcomes of IBD.

Learn more here: https://www.cureus.com/articles/89737-stress-and-inflammatory-bowel-disease-clear-mind-happy-colon

And for tips on managing psychological stress, especially in children, visit our website to access a variety of resources, including a guide to mindfulness, managing depression and sadness, preparing for clinical appointments, and more: https://www.robbiesrainbow.ca/resources/education-guides/

05/26/2022

We’ve talked before about the importance of psychosocial support for children with celiac disease and other digestive diseases, because we believe this is such an important topic. And as May is Celiac Disease Awareness Month, it’s the perfect time to bring more awareness to the challenges that kids with celiac disease face, and the importance of getting them the proper support — not just at the doctor’s office, but in terms of support from family and friends or perhaps from a psychologist, social worker, dietitian, or other health care practitioner.

Kids with celiac disease and other digestive illnesses risk feeling isolated or lonely. They’re also at risk of increased anxiety, depression, and sadness. Fortunately, there are many forms of community and peer-to-peer support available.

Read more here: https://healthier.stanfordchildrens.org/en/psychosocial-support-for-children-with-celiac-disease/

And visit our website to learn more: https://www.robbiesrainbow.ca/depression-and-ibd/

05/19/2022

Today is World IBD Day, a day that unites people worldwide in their fight against inflammatory bowel diseases, including Crohn’s disease and ulcerative colitis. World IBD Day is led by patient organizations, including Robbie’s Rainbow. As the only Canadian children's charity dedicated to improving the health and quality of life of children living with IBD, we’re proud to be part of this important initiative.

Today, over 50 countries on 5 continents will be working to raise awareness about IBD, to urge governments and health care professionals to take action, and to show support for the 10 million people worldwide who live with IBD.

Please help us in recognizing World IBD Day. Drop a purple heart in the comments below, share this post, and help to spread IBD awareness in your community.

04/29/2022

Inflammatory bowel disease (IBD), including Crohn’s disease and ulcerative colitis, is a lifelong disease that requires personalized treatment. It’s important for children with IBD to receive the treatment and care they need, because IBD can lead to a variety of negative consequences down the line. These include:
* Growth impairment
* Arthritis
* Skin conditions
* Inflammation of the eyes
* Liver and kidney disorders
* Bone loss
* Increased risk of intestinal cancer
* Intestinal strictures causing bowel obstruction
* Intestinal perforation causing fistulas and abscesses

While there’s no permanent cure for IBD, proper care and treatment can help keep children’s symptoms under control and reduce the risk of these long-term effects and complications. And that’s why we work so hard to ensure that every Canadian child can access the care they need, regardless of cost and other barriers.

04/27/2022

All kids should feel like superheroes — bold, brave, adventurous, and invincible. At Robbie’s Rainbow, we believe strongly that no child or family should feel unsupported or alone, or go without the IBD treatment and care they need.

Our advocacy and education efforts range from supporting pathways to access safe and effective medicines for children diagnosed with Crohn’s disease and ulcerative colitis — as well as other digestive diseases, such as gastroesophageal reflux disease (GERD), Celiac disease and Eosinophilic Esophagitis (EoE) — to providing these young patients and their families with the health information they need to make informed decisions about their digestive health and strategies to improve their quality of life. We’re also working to provide children, teens and families with resources that are easy to understand, tools that improve disease management, and strategies to live beyond one’s diagnosis with confidence while advocating for the health needs of our community.

Can we support you? Send us a DM to get started.

04/25/2022

Did you know that we have a range of printable resources on our website? From apps to help manage IBD and other digestive diseases in children to info about diet, depression, biosimilars and more, we’re here to support families and children living with digestive disorders. Visit our website to access our resources: https://www.robbiesrainbow.ca/resources/educational

04/22/2022

“Normal” stool elimination varies from person to person, but the healthy norm is generally considered to be 1-3 times per day, with even 3 times per week considered OK by many health care practitioners. Constipation is a condition in which a person has uncomfortable or infrequent bowel movements. Generally, a person is considered to be constipated when bowel movements result in the passage of small amounts of hard, dry stool, usually fewer than three times a week.

When the colon's muscle contractions are slow or sluggish, the stool moves through the colon too slowly, resulting in too much water being absorbed. Some of the most common causes of constipation include:
* Medications
* Lack of exercise
* Not enough liquids
* Not enough fiber in the diet
* Irritable bowel syndrome
* Irritable bowel disease

While IBD (including Crohn’s and ulcerative colitis) are often associated with multiple daily bathroom trips and loose stools, constipation is also a common IBD symptom.

Talk to your doctor to learn more if your child is experiencing constipation.

04/20/2022

Connection, communication and honesty matter when it comes to engaging with your child’s teacher or school. When your child has a chronic disease like IBD, it’s important to work together with their school to ensure they feel safe and successful at school.

On our blog, we’ve got tips and advice from teacher Katie McBeath, who teaches grades 7-9, on how best to build connection and communication between parents and their child’s education team. This is a must-read for those seeking to make a strong, lasting parent-teacher relationship to support their child living with IBD.

Read more here: https://www.robbiesrainbow.ca/connection-communication/

04/18/2022

Did you know that it’s estimated that over 8,000 children in Canada have been diagnosed with Crohn’s disease or ulcerative colitis and that one in 10,000 children have eosinophilic esophagitis (EoE), one in 1,000 children are affected by celiac disease, and 56,000 Canadian children are estimated to be diagnosed with gastroesophageal reflux disease (GERD) every year?

Chances are that one of these five diseases affects you or someone you know or love.

You can make a difference by helping Robbie’s Rainbow improve the lives of children and teens living with a digestive disease. When you fundraise for our organization, your donated dollars will help children in need of critical treatments access essential treatments and support children, teens and families through our education programs and resources.

There are many fun and easy ways to fundraise for Robbie’s Rainbow in your community. Learn more by visiting our website: https://www.robbiesrainbow.ca/ways-to-help/fundraise/

Address

478 Dundas Street West, Suite 30052
Oakville, ON
L6H7L8

Website

http://www.robbiesrainbow.ca/

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