2022 Spring Impact report

Spring 2022 Impact Report
DRIVING TRANSFORMATIONAL BREAKTHROUGHS
2022 Spring Impact report
Spring 2022 Impact Report
DRIVING TRANSFORMATIONAL BREAKTHROUGHS
hero impact report 2022
A Message From Our Leadership
Michael Osso, CEO & Brent Polk, MD, AGAF, Chair of the Board

The last two years have been extraordinary, to say the least. With the unfolding uncertainty of COVID-19, we had little idea of the magnitude of what lay ahead. We found ourselves faced with an unprecedented health, economic, and social crisis impacting every facet of the way we live and work. And these challenges have not let up.

When we go through challenging times, we learn more about ourselves. For the Crohn’s & Colitis Foundation, these times further demonstrated how important our work is and the commitment of our inflammatory bowel disease (IBD) community. Because of the dedication of our staff and volunteers, the tenacity of our patients, caregivers, and donors, as well as the brilliance of our researchers and clinicians, the Foundation has been able to actually build momentum in its research, patient support, and advocacy programs.

Throughout this report, you will see how we are continuing to deliver on our mission through innovation and transformational research initiatives. This inventive spirit is part of our DNA; our organization was built by patients, healthcare professionals, and resilient donors committed to funding research to accelerate cures while also helping patients throughout their IBD disease journey.

The following pages showcase some of our most important work in 2021, thanks to your commitment to the Foundation. You will learn how we:

  • Launched two important new research cohorts, CAPTURE IBD and IBD SIRQC, that will help discover new and better ways to treat patients.

  • Leveraged stem cell technology to grow “mini-guts” in the laboratory as part of the Foundation’s Fibrosis initiative.

  • Participated in improving patient quality of life and driving toward remission by answering your questions about biosimilars, supporting children with IBD, and improving access to care by providing IBD education and resources for U.S. veterans.

  • Expanded our awareness and support efforts for IBD patients with our new restroom app and pediatric TV spots.

We also want to communicate more regularly with you, our supporters. We are pleased to share that the Foundation will now publish three Impact Reports throughout the year rather than one Annual Report, enabling us to report on our progress in a more timely way. As you read this issue, you’ll see how your commitment and generosity has helped to accelerate progress and directly impacted the Foundation’s work. We know that we can only truly achieve our mission—especially cures for these complex and debilitating diseases—by working together, and we thank you, our community, for all you have done to support our mission.

When we look to 2022 and beyond, we are excited to see endless opportunities. The Foundation’s 2021-2024 strategic plan will ensure that our decisions over the next several years remain focused on top priorities. But we know that at the end of the day, strategies and priorities will only count if we execute well. We are committed to delivering on our strategic plan, and, with your continued support, we have confidence that we will. And in doing so, we’ll advance toward our ultimate goal—cures for Crohn’s disease and ulcerative colitis.

We are grateful to you, the core members of our community. And while we have made enormous progress, we still have so much to do. Thank you for everything you have done and continue to do as we work together to find cures.

 

With warmest regards,

Michael Osso headshot

 

Michael Osso

President & CEO

Michael Osso, President & CEO - signature
Brent Polk, MD headshot

 

Brent Polk, MD, AGAF

Chair, Board of Trustees

Dr. Brent Polk signature
Advancing New Therapies
Research to uncover new treatments and bring us closer to cures
Advancing Research on “Mini Guts”
Three-dimensional models are helping scientists uncover the roots of fibrosis and test out treatments.

It might sound like science fiction, but we’re using stem cell technology to grow three-dimensional “mini guts” in laboratory micro-engineered chips as the basis of our Fibrosis Initiative, a multi-disciplinary collaborative study investigating the biological mechanisms of fibrosis in IBD. Also known as “gut on a chip” or “human organoids,” the mini gut models are enabling scientists to learn more about the role that genes and other factors play in the development of fibrosis.

Fibrosis, which is a buildup of scar tissues in the intestines, is a common complication that can lead to surgery. Thanks to funding by the Foundation, researchers at Cedars Sinai have been refining this technology and recently published a proof-of-concept study in Inflammatory Bowel Diseases® (IBD Journal) proving that they can create personalized mini guts from any patient using “induced pluripotent stem cells.” This is the first publication funded through our Fibrosis Initiative.

Pluripotent stem cells have the potential to turn into any type of cell in the body. Until recently, many scientists believed that only embryonic stem cells had this capability. Robert Barrett, PhD, and Stephan Targan, MD, used a grant from the Foundation to develop an unprecedented methodology: They can now take blood samples from an adult patient, extract stem cells from their blood, induce those stem cells to convert to a pluripotent (embryonic) state, and use them to create mini guts that match the genetics of that same patient.

Barrett and Targan have also been able to induce fibrosis in the mini gut model by exposing the cells to an inflammatory cytokine (protein) called TGF-beta.

This research will enable scientists to learn more about the mechanisms that cause fibrosis and ideally one day help them explain why certain patients are prone to it. “It also opens the door for precision medicine,” says Barrett. After growing a mini gut of a particular patient, doctors could evaluate different anti-fibrotic therapies in the mini gut model to see which one would likely produce the best response if prescribed to the patient.

“Our findings mark a major step forward in addressing the mechanism of fibrosis in IBD,” says Barrett. “This research would not have been possible without the Crohn’s & Colitis Foundation. They inspired a completely new line of inquiry for my lab and gave us the perfect opportunity to apply our technology to address this vexing problem for IBD researchers, specialists, and patients. We look forward to using these mini guts for many future investigations into the causes of and treatments for fibrosis.”

This project is generously supported by Jonathan D. Rose, MD, PhD as part of the Jonathan D. Rose, MD, PhD, Crohn’s & Colitis Foundation / Cedars-Sinai Pathology in Precision Medicine Research Collaborative.

 

Build a Mini Gut graphic
Our findings mark a major step forward in addressing the mechanism of fibrosis in IBD… 
Robert Barrett, PhD
Advancing Research on “Mini Guts”
Three-dimensional models are helping scientists uncover the roots of fibrosis and test out treatments.

It might sound like science fiction, but we’re using stem cell technology to grow three-dimensional “mini guts” in laboratory micro-engineered chips as the basis of our Fibrosis Initiative, a multi-disciplinary collaborative study investigating the biological mechanisms of fibrosis in IBD. Also known as “gut on a chip” or “human organoids,” the mini gut models are enabling scientists to learn more about the role that genes and other factors play in the development of fibrosis.

Fibrosis, which is a buildup of scar tissues in the intestines, is a common complication that can lead to surgery. Thanks to funding by the Foundation, researchers at Cedars Sinai have been refining this technology and recently published a proof-of-concept study in Inflammatory Bowel Diseases® (IBD Journal) proving that they can create personalized mini guts from any patient using “induced pluripotent stem cells.” This is the first publication funded through our Fibrosis Initiative.

Pluripotent stem cells have the potential to turn into any type of cell in the body. Until recently, many scientists believed that only embryonic stem cells had this capability. Robert Barrett, PhD, and Stephan Targan, MD, used a grant from the Foundation to develop an unprecedented methodology: They can now take blood samples from an adult patient, extract stem cells from their blood, induce those stem cells to convert to a pluripotent (embryonic) state, and use them to create mini guts that match the genetics of that same patient.

Barrett and Targan have also been able to induce fibrosis in the mini gut model by exposing the cells to an inflammatory cytokine (protein) called TGF-beta.

This research will enable scientists to learn more about the mechanisms that cause fibrosis and ideally one day help them explain why certain patients are prone to it. “It also opens the door for precision medicine,” says Barrett. After growing a mini gut of a particular patient, doctors could evaluate different anti-fibrotic therapies in the mini gut model to see which one would likely produce the best response if prescribed to the patient.

“Our findings mark a major step forward in addressing the mechanism of fibrosis in IBD,” says Barrett. “This research would not have been possible without the Crohn’s & Colitis Foundation. They inspired a completely new line of inquiry for my lab and gave us the perfect opportunity to apply our technology to address this vexing problem for IBD researchers, specialists, and patients. We look forward to using these mini guts for many future investigations into the causes of and treatments for fibrosis.”

This project is generously supported by Jonathan D. Rose, MD, PhD as part of the Jonathan D. Rose, MD, PhD, Crohn’s & Colitis Foundation / Cedars-Sinai Pathology in Precision Medicine Research Collaborative.

 

Build a Mini Gut graphic
Our findings mark a major step forward in addressing the mechanism of fibrosis in IBD… 
Robert Barrett, PhD
Improving Quality of Life and Driving Toward Remission
Initiatives to inform and support clinicians, patients, and caregivers
Filling Crucial Gaps in Scientific Knowledge
New research cohorts will advance precision medicine in children and yield insights about surgical techniques and outcomes.

The field of inflammatory bowel disease (IBD) research has advanced exponentially in recent years, yet many questions remain unanswered. How do we precisely match children with IBD to the right medication more quickly? Why do so many Crohn’s disease patients eventually require surgery, and how can we predict those patients at highest risk for post-surgery complications or disease recurrence? These are crucial knowledge gaps we aim to address with the creation of two brand-new research projects: CAPTURE IBD and IBD SIRQC.

CAPTURE IBD and IBD SIRQC are forward-looking cohort studies. A cohort study is a type of observational study in which researchers follow participants over an extended period of time. Data from both of these will feed into IBD Plexus®, our interconnected big data platform.

 

Advancing Precision Medicine in Children

Unfortunately, much of the care provided to kids with IBD has been based on what we’ve learned by studying adults. We need more pediatric-specific research to develop best practices for kids. CAPTURE IBD (Cohort for Pediatric Clinical and Translational Research in IBD) is poised to become a robust repository of data on children ages 4–21 with IBD. CAPTURE builds on the highly successful Pediatric RISK Stratification Study, which identified a biological signature that could predict whether a child newly diagnosed with Crohn’s disease would develop serious complications.

While the RISK study was limited to Crohn’s disease, CAPTURE will also include children with ulcerative colitis. CAPTURE’s ultimate goal is to advance precision medicine by matching distinct subgroups of patients to the specific drug therapy or therapies most likely to be effective for them.

Participants in CAPTURE will continue receiving their usual care while sharing detailed data about their health along with blood, stool, and tissue samples for use in the study. Researchers will then thoroughly analyze demographic, clinical, and “multi-omics” data (which includes, for example, genomics, and microbiomics) and aim to develop biological signatures that can be used to flag patients as being likely responders or non-responders to specific types of biologic drugs.

CAPTURE is being led by Michael Rosen, MD, at Stanford Medicine and Stacy Kahn, MD, at Boston Children’s Hospital, with a total of 12 pediatric IBD centers participating.

 

Improving Surgical Outcomes

IBD SIRQC (IBD Surgical Innovation, Research, and Quality Collaborative) is the Foundation’s first-ever surgical research initiative. SIRQC will enroll adults with Crohn’s disease or ulcerative colitis preparing to have GI surgery and will follow them through their surgery and beyond to track long-term surgery outcomes and our understanding of the impact of surgery on IBD including post-procedure complications and disease recurrence.

“SIRQC will help advance the scientific understanding of the impact surgery has on patient outcomes,” says Alandra Weaver, MPH, the Foundation’s Associate Vice President of Clinical Quality and Research Innovation. It also aims to advance precision medicine by identifying factors that can be used to predict who is most likely to remain healthy after surgery and who will need further intervention and treatment. SIRQC is being spearheaded by Stefan Holubar, MD, at the Cleveland Clinic, and Samuel Eisenstein, MD, at UC San Diego Health, with a total of 9 sites (and growing) participating across the country.

Participants in SIRQC will undergo surgery with their participating GI surgeon and give permission to share data and biosamples for analysis.

This project is generously supported by Jonathan D. Rose, MD, PhD.

Surgeons working in OR
IBD SIRQC, the Foundation's first-ever surgical research initiative, will shed light on best surgical practices and patient outcomes.
SIRQC
SIRQC aims to help the 70% of people with Crohn’s disease and 30% of those with ulcerative colitis who will undergo at least one GI surgery during their lifetime.
Filling Crucial Gaps in Scientific Knowledge
New research cohorts will advance precision medicine in children and yield insights about surgical techniques and outcomes.

The field of inflammatory bowel disease (IBD) research has advanced exponentially in recent years, yet many questions remain unanswered. How do we precisely match children with IBD to the right medication more quickly? Why do so many Crohn’s disease patients eventually require surgery, and how can we predict those patients at highest risk for post-surgery complications or disease recurrence? These are crucial knowledge gaps we aim to address with the creation of two brand-new research projects: CAPTURE IBD and IBD SIRQC.

CAPTURE IBD and IBD SIRQC are forward-looking cohort studies. A cohort study is a type of observational study in which researchers follow participants over an extended period of time. Data from both of these will feed into IBD Plexus®, our interconnected big data platform.

 

Advancing Precision Medicine in Children

Unfortunately, much of the care provided to kids with IBD has been based on what we’ve learned by studying adults. We need more pediatric-specific research to develop best practices for kids. CAPTURE IBD (Cohort for Pediatric Clinical and Translational Research in IBD) is poised to become a robust repository of data on children ages 4–21 with IBD. CAPTURE builds on the highly successful Pediatric RISK Stratification Study, which identified a biological signature that could predict whether a child newly diagnosed with Crohn’s disease would develop serious complications.

While the RISK study was limited to Crohn’s disease, CAPTURE will also include children with ulcerative colitis. CAPTURE’s ultimate goal is to advance precision medicine by matching distinct subgroups of patients to the specific drug therapy or therapies most likely to be effective for them.

Participants in CAPTURE will continue receiving their usual care while sharing detailed data about their health along with blood, stool, and tissue samples for use in the study. Researchers will then thoroughly analyze demographic, clinical, and “multi-omics” data (which includes, for example, genomics, and microbiomics) and aim to develop biological signatures that can be used to flag patients as being likely responders or non-responders to specific types of biologic drugs.

CAPTURE is being led by Michael Rosen, MD, at Stanford Medicine and Stacy Kahn, MD, at Boston Children’s Hospital, with a total of 12 pediatric IBD centers participating.

 

Improving Surgical Outcomes

IBD SIRQC (IBD Surgical Innovation, Research, and Quality Collaborative) is the Foundation’s first-ever surgical research initiative. SIRQC will enroll adults with Crohn’s disease or ulcerative colitis preparing to have GI surgery and will follow them through their surgery and beyond to track long-term surgery outcomes and our understanding of the impact of surgery on IBD including post-procedure complications and disease recurrence.

“SIRQC will help advance the scientific understanding of the impact surgery has on patient outcomes,” says Alandra Weaver, MPH, the Foundation’s Associate Vice President of Clinical Quality and Research Innovation. It also aims to advance precision medicine by identifying factors that can be used to predict who is most likely to remain healthy after surgery and who will need further intervention and treatment. SIRQC is being spearheaded by Stefan Holubar, MD, at the Cleveland Clinic, and Samuel Eisenstein, MD, at UC San Diego Health, with a total of 9 sites (and growing) participating across the country.

Participants in SIRQC will undergo surgery with their participating GI surgeon and give permission to share data and biosamples for analysis.

This project is generously supported by Jonathan D. Rose, MD, PhD.

Surgeons working in OR
IBD SIRQC, the Foundation's first-ever surgical research initiative, will shed light on best surgical practices and patient outcomes.
SIRQC
SIRQC aims to help the 70% of people with Crohn’s disease and 30% of those with ulcerative colitis who will undergo at least one GI surgery during their lifetime.
Answering Your Questions About Biosimilars
Clearing up confusion about alternatives to brand-name biologics

Biologic drugs are often expensive, even for people who have health insurance. Enter lower-cost biosimilars, which are nearly identical copies of biologic drugs and have equal potential to get patients into remission. Yet many misconceptions about biosimilars persist. To combat them and inform patients, we created multiple online resources and a dedicated MyIBD Learning Webinar on the topic.

 

Q. Are biosimilars the same as generic drugs?

A. A generic drug contains an exact copy of the chemical compound that comprises the active ingredient of a brand-name drug. Generics are easy to make and are stable, so they can be produced quickly.

A biosimilar is a near identical copy of a brand-name biologic drug (known as the reference product). But it’s impossible for it to be an exact copy because biologics are made from complex proteins derived from living cells. “The manufacturing process for a biologic—and its biosimilar—is far more complex, though the active ingredients are the same,” Christina Ha, MD, of Cedars-Sinai, explained during our webinar. “It takes a long time to develop a biosimilar—up to 7 or 8 years.”

 

Q. Are biosimilars as good as “real” biologics?

A. “The number of quality assurance tests that need to be done prior to FDA approval [of a biosimilar drug] is much higher than what needs to be done prior to approval of a generic drug,” said Ha. “I think a lot of the concern is due to the fact they’re called biosimilar, not bioexact.” But when comparing a biosimilar to the reference product, “there is no difference in terms of effectiveness, potency, purity, or safety,” she said.

 

Q. Will I respond the same way to a biosimilar as I did to the biologic?

A. The strength, dosage, storage, and infusion rate or injection process are all the same, so you shouldn’t notice any difference. “Biosimilars are administered exactly the same way as the reference product,” said Ha. “The treatment routines and quality of care should be identical.”

You can learn more and watch the full MyIBD Learning Webinar at Biosimilars: What You Should Know.

Mother and daughter outdoors, hugging and upset
Go With Your Gut: 

Look out for our new pediatric TV spot, which is the most recent addition to our "Spill Your Guts" TV, print, radio, and billboard public service campaign. The overarching goal: to encourage people with IBD symptoms to consult a specialist. This campaign is currently airing on over 120 TV stations resulting in over 100 million advertising impressions, and the related web landing page has been visited over 35,000 times. 

infliximab
Biosimilars are just as effective as brand-name biologics, despite minor differences between these complex proteins.
Infliximab dyyb
Answering Your Questions About Biosimilars
Clearing up confusion about alternatives to brand-name biologics

Biologic drugs are often expensive, even for people who have health insurance. Enter lower-cost biosimilars, which are nearly identical copies of biologic drugs and have equal potential to get patients into remission. Yet many misconceptions about biosimilars persist. To combat them and inform patients, we created multiple online resources and a dedicated MyIBD Learning Webinar on the topic.

 

Q. Are biosimilars the same as generic drugs?

A. A generic drug contains an exact copy of the chemical compound that comprises the active ingredient of a brand-name drug. Generics are easy to make and are stable, so they can be produced quickly.

A biosimilar is a near identical copy of a brand-name biologic drug (known as the reference product). But it’s impossible for it to be an exact copy because biologics are made from complex proteins derived from living cells. “The manufacturing process for a biologic—and its biosimilar—is far more complex, though the active ingredients are the same,” Christina Ha, MD, of Cedars-Sinai, explained during our webinar. “It takes a long time to develop a biosimilar—up to 7 or 8 years.”

 

Q. Are biosimilars as good as “real” biologics?

A. “The number of quality assurance tests that need to be done prior to FDA approval [of a biosimilar drug] is much higher than what needs to be done prior to approval of a generic drug,” said Ha. “I think a lot of the concern is due to the fact they’re called biosimilar, not bioexact.” But when comparing a biosimilar to the reference product, “there is no difference in terms of effectiveness, potency, purity, or safety,” she said.

 

Q. Will I respond the same way to a biosimilar as I did to the biologic?

A. The strength, dosage, storage, and infusion rate or injection process are all the same, so you shouldn’t notice any difference. “Biosimilars are administered exactly the same way as the reference product,” said Ha. “The treatment routines and quality of care should be identical.”

You can learn more and watch the full MyIBD Learning Webinar at Biosimilars: What You Should Know.

Mother and daughter outdoors, hugging and upset
Go With Your Gut: 

Look out for our new pediatric TV spot, which is the most recent addition to our "Spill Your Guts" TV, print, radio, and billboard public service campaign. The overarching goal: to encourage people with IBD symptoms to consult a specialist. This campaign is currently airing on over 120 TV stations resulting in over 100 million advertising impressions, and the related web landing page has been visited over 35,000 times. 

infliximab
Biosimilars are just as effective as brand-name biologics, despite minor differences between these complex proteins.
Infliximab dyyb
Spotlight: Daniel Castañeda, MD, Visiting IBD Fellow
Daniel Castañeda, MD, reflects on shadowing leading gastroenterologists at the University of Chicago.

Our Visiting IBD Fellow Program is a highly competitive opportunity that enables a select group of gastroenterology fellows to shadow experts at leading IBD centers. During our 2020–2021 cycle, 18 of them completed a one-month virtual rotation at IBD centers across the country. Daniel Castañeda, MD, who completed a virtual rotation at the University of Chicago, shares his experience:

“Despite being virtual, I felt very engaged the whole time. I was assigned to shadow Dr. David Rubin, MD, and Dr. Russell Cohen, MD, who are both renowned leaders in the field. I ‘followed’ them and others on their team by using a tablet. During every single encounter with a patient, I was introduced to that patient, and we’d have a conversation. I was able to ask questions and participate in discussions about diagnosis and treatment options, and after each case we’d debrief. We also reviewed previous patient cases and discussed how they were handled.

One of the most important things I learned was how to really tailor information and treatments to each person with an eye on providing them with the best possible quality of life. Some patients we saw had very complex disease, so we had to consider everything from the use of newer small-molecule drugs to surgical options.

I would say without hesitation it was a great experience. It provided me with mentoring from experts in the field and expanded my knowledge about diagnostic, surveillance, and therapeutic tools for patients with IBD. I want to thank the Crohn’s & Colitis Foundation for giving me this valuable opportunity.”

Additional information is available on our Visiting IBD Fellow Program homepage.

Educating the Experts:

The Foundation is committed to keeping healthcare professionals well-informed so that they can help more patients get into remission and achieve a better quality of life. Our microsite, IBD Clinical Hub, contains the latest education, resources, and links to in-person professional education programs. Since its inception in June 2020, the Hub’s unique user count has gone from 20,245 unique views in the last six months of 2020 to 20,544 for 2021. More than 15 educational activities were added to the IBD Clinical Hub in 2021 for a total of 150 programs.

Daniel C Visiting IBD Fellow headshiot
Daniel Castañeda, MD, attending gastroenterologist at Cone Health Annie Penn Hospital in Reidsville, NC.
Spotlight: Daniel Castañeda, MD, Visiting IBD Fellow
Daniel Castañeda, MD, reflects on shadowing leading gastroenterologists at the University of Chicago.

Our Visiting IBD Fellow Program is a highly competitive opportunity that enables a select group of gastroenterology fellows to shadow experts at leading IBD centers. During our 2020–2021 cycle, 18 of them completed a one-month virtual rotation at IBD centers across the country. Daniel Castañeda, MD, who completed a virtual rotation at the University of Chicago, shares his experience:

“Despite being virtual, I felt very engaged the whole time. I was assigned to shadow Dr. David Rubin, MD, and Dr. Russell Cohen, MD, who are both renowned leaders in the field. I ‘followed’ them and others on their team by using a tablet. During every single encounter with a patient, I was introduced to that patient, and we’d have a conversation. I was able to ask questions and participate in discussions about diagnosis and treatment options, and after each case we’d debrief. We also reviewed previous patient cases and discussed how they were handled.

One of the most important things I learned was how to really tailor information and treatments to each person with an eye on providing them with the best possible quality of life. Some patients we saw had very complex disease, so we had to consider everything from the use of newer small-molecule drugs to surgical options.

I would say without hesitation it was a great experience. It provided me with mentoring from experts in the field and expanded my knowledge about diagnostic, surveillance, and therapeutic tools for patients with IBD. I want to thank the Crohn’s & Colitis Foundation for giving me this valuable opportunity.”

Additional information is available on our Visiting IBD Fellow Program homepage.

Educating the Experts:

The Foundation is committed to keeping healthcare professionals well-informed so that they can help more patients get into remission and achieve a better quality of life. Our microsite, IBD Clinical Hub, contains the latest education, resources, and links to in-person professional education programs. Since its inception in June 2020, the Hub’s unique user count has gone from 20,245 unique views in the last six months of 2020 to 20,544 for 2021. More than 15 educational activities were added to the IBD Clinical Hub in 2021 for a total of 150 programs.

Daniel C Visiting IBD Fellow headshiot
Daniel Castañeda, MD, attending gastroenterologist at Cone Health Annie Penn Hospital in Reidsville, NC.
Changing Children’s Lives
Survey confirms “life changing” impact of Camp Oasis, our summer camp for kids with IBD.

Living with IBD can be challenging for anyone, but children in particular often report feeling isolated or embarrassed as a result of their disease. Camp Oasis, our co-ed residential summer camp for kids with IBD, has frequently been described as life changing—and now we have the data to prove it.

We recently analyzed responses to online surveys completed before and after camp by more than 6,000 people (a mix of campers who participated in Camp Oasis between 2012 and 2019 as well as their parents/caregivers). Their feedback confirmed the power of this program: Ratings provided by campers and their parents/caregivers consistently show very large improvement in openness, confidence, sociability, and more. As you’ll see in the chart below, after camp, the number of respondents who agreed a lot that the campers were “open about their disease with friends” increased by 56% versus surveys submitted before camp. Other measures, such as “Campers were comfortable asking doctors about IBD,” and “Campers were confident after Camp,” showed after-camp increases of 46% and 44% respectively in the “agrees a lot” category.

In the words of one parent, “Camp Oasis has been the most impactful, valued, fulfilling, and fun week of my daughter’s life for the past 6 years. Camp nourishes her soul and gives her confidence. It has taught her to become a fierce advocate for her needs, whether in a school [or] athletic, social, or family environment. She is committed to continuing with Camp Oasis and ultimately would like to become a pediatric gastroenterologist. Camp Oasis has given more to our family than we can ever repay.”

We are grateful to our generous donors who make Camp Oasis possible every year.

 

Camp Oasis graphic
Camp Oasis camper holding up t-shirt
Camp Oasis offers children with IBD a unique opportunity to connect with each other in an enriching environment.
Changing Children’s Lives
Survey confirms “life changing” impact of Camp Oasis, our summer camp for kids with IBD.

Living with IBD can be challenging for anyone, but children in particular often report feeling isolated or embarrassed as a result of their disease. Camp Oasis, our co-ed residential summer camp for kids with IBD, has frequently been described as life changing—and now we have the data to prove it.

We recently analyzed responses to online surveys completed before and after camp by more than 6,000 people (a mix of campers who participated in Camp Oasis between 2012 and 2019 as well as their parents/caregivers). Their feedback confirmed the power of this program: Ratings provided by campers and their parents/caregivers consistently show very large improvement in openness, confidence, sociability, and more. As you’ll see in the chart below, after camp, the number of respondents who agreed a lot that the campers were “open about their disease with friends” increased by 56% versus surveys submitted before camp. Other measures, such as “Campers were comfortable asking doctors about IBD,” and “Campers were confident after Camp,” showed after-camp increases of 46% and 44% respectively in the “agrees a lot” category.

In the words of one parent, “Camp Oasis has been the most impactful, valued, fulfilling, and fun week of my daughter’s life for the past 6 years. Camp nourishes her soul and gives her confidence. It has taught her to become a fierce advocate for her needs, whether in a school [or] athletic, social, or family environment. She is committed to continuing with Camp Oasis and ultimately would like to become a pediatric gastroenterologist. Camp Oasis has given more to our family than we can ever repay.”

We are grateful to our generous donors who make Camp Oasis possible every year.

 

Camp Oasis graphic
Camp Oasis camper holding up t-shirt
Camp Oasis offers children with IBD a unique opportunity to connect with each other in an enriching environment.
We Can’t Wait: New App Helps Inflammatory Bowel Disease Patients Find Available Restrooms Nearby
As the leading initiative in the Crohn’s & Colitis Foundation’s Open Restrooms Movement, the new app will expand restroom access for all users.

The Crohn’s & Colitis Foundation, the leading non-profit dedicated to finding cures for inflammatory bowel disease (IBD) and improving patient quality of life, recently launched the We Can’t Wait app, which provides an interactive map that allows users to find a restroom near them across the U.S. Driven by crowdsourced submissions and major retail and restaurant partners that contributed their restroom location data, the app empowers IBD patients—and all users—with a tool to find restrooms more easily, both in emergency and everyday situations. The app is free and available for download now.

With significant support from lead sponsor Eli Lilly, the We Can’t Wait app helps individuals solve for a significant public health issue: a lack of available public restrooms. Everyone has experienced the challenge of being away from home and needing to use a restroom, but for some people, like IBD patients, quick restroom access is a medical necessity. Many IBD patients experience urgent bowel movements, which can happen unexpectedly at anytime, anywhere. If a restroom isn’t immediately available (or if they are turned away by a business), patients may face debilitating pain, extreme anxiety, and even traumatic bowel accidents.

The We Can’t Wait app is the centerpiece of the Foundation’s Open Restrooms Movement. In partnership with peer healthcare advocacy organizations, we are calling on stakeholders in the public and private sectors to recognize the issue of restroom access as a basic human need and permit public access to restrooms wherever possible. Businesses and governments can help solve this critical scarcity of public restrooms with a simple act of human kindness: opening their restrooms.

“Our patient community has always been vocal about the challenges and frustrations that come with finding a restroom. The Foundation has fought alongside them to ensure patients can achieve the highest quality of life, ” said Michael Osso, President and CEO of the Crohn’s & Colitis Foundation. “By creating resources like the We Can’t Wait app and sparking more conversations about IBD and restroom access, we are working to foster a safer, healthier, and more understanding world for IBD patients.”

On the app, users simply navigate the on-screen map to find a restroom close to their location; they can also submit locations to be added to the map. To kickstart the app’s launch and ensure more businesses will be genuinely welcoming to patients, the Foundation is partnering with major U.S. retailers and restaurants, including the Home Depot and Just Salads, among others. With more than 3,000 partner locations at launch (45,000 total), the Foundation is actively adding restrooms through partnerships and crowdsourcing.

We Can’t Wait builds on the Foundation’s longstanding efforts to ensure restroom access for anyone with a medical necessity. The Foundation’s support for patient advocacy at the state level has helped lead to the passage of the Restroom Access Act (also known as Ally’s Law) in 18 states, which gives patients with certain medical conditions access to employee-only restrooms if a public one is unavailable. While the Foundation has long supported local volunteer efforts at the state level as they promoted this legislation, we find that awareness of the law is very low, and compliance by businesses is still a major issue for patients. The Open Restrooms Movement is another way to help give patients more access to this very fundamental human need.

For more information, please visit our We Can’t Wait: Restroom Access App homepage.

We Can't Wait - Find a Restroom app
We offer a variety of resources to help IBD patients obtain quick restroom access when they’re away from home.
We Can’t Wait: New App Helps Inflammatory Bowel Disease Patients Find Available Restrooms Nearby
As the leading initiative in the Crohn’s & Colitis Foundation’s Open Restrooms Movement, the new app will expand restroom access for all users.

The Crohn’s & Colitis Foundation, the leading non-profit dedicated to finding cures for inflammatory bowel disease (IBD) and improving patient quality of life, recently launched the We Can’t Wait app, which provides an interactive map that allows users to find a restroom near them across the U.S. Driven by crowdsourced submissions and major retail and restaurant partners that contributed their restroom location data, the app empowers IBD patients—and all users—with a tool to find restrooms more easily, both in emergency and everyday situations. The app is free and available for download now.

With significant support from lead sponsor Eli Lilly, the We Can’t Wait app helps individuals solve for a significant public health issue: a lack of available public restrooms. Everyone has experienced the challenge of being away from home and needing to use a restroom, but for some people, like IBD patients, quick restroom access is a medical necessity. Many IBD patients experience urgent bowel movements, which can happen unexpectedly at anytime, anywhere. If a restroom isn’t immediately available (or if they are turned away by a business), patients may face debilitating pain, extreme anxiety, and even traumatic bowel accidents.

The We Can’t Wait app is the centerpiece of the Foundation’s Open Restrooms Movement. In partnership with peer healthcare advocacy organizations, we are calling on stakeholders in the public and private sectors to recognize the issue of restroom access as a basic human need and permit public access to restrooms wherever possible. Businesses and governments can help solve this critical scarcity of public restrooms with a simple act of human kindness: opening their restrooms.

“Our patient community has always been vocal about the challenges and frustrations that come with finding a restroom. The Foundation has fought alongside them to ensure patients can achieve the highest quality of life, ” said Michael Osso, President and CEO of the Crohn’s & Colitis Foundation. “By creating resources like the We Can’t Wait app and sparking more conversations about IBD and restroom access, we are working to foster a safer, healthier, and more understanding world for IBD patients.”

On the app, users simply navigate the on-screen map to find a restroom close to their location; they can also submit locations to be added to the map. To kickstart the app’s launch and ensure more businesses will be genuinely welcoming to patients, the Foundation is partnering with major U.S. retailers and restaurants, including the Home Depot and Just Salads, among others. With more than 3,000 partner locations at launch (45,000 total), the Foundation is actively adding restrooms through partnerships and crowdsourcing.

We Can’t Wait builds on the Foundation’s longstanding efforts to ensure restroom access for anyone with a medical necessity. The Foundation’s support for patient advocacy at the state level has helped lead to the passage of the Restroom Access Act (also known as Ally’s Law) in 18 states, which gives patients with certain medical conditions access to employee-only restrooms if a public one is unavailable. While the Foundation has long supported local volunteer efforts at the state level as they promoted this legislation, we find that awareness of the law is very low, and compliance by businesses is still a major issue for patients. The Open Restrooms Movement is another way to help give patients more access to this very fundamental human need.

For more information, please visit our We Can’t Wait: Restroom Access App homepage.

We Can't Wait - Find a Restroom app
We offer a variety of resources to help IBD patients obtain quick restroom access when they’re away from home.
Improving Access to Care
Breaking down barriers to optimal care for everyone with IBD
IBD Help for Heroes
New suite of educational resources helps veterans find the right support.

If you’re a veteran with IBD, finding the right information and support can sometimes be challenging. That’s why on Veteran’s Day 2021, we launched a brand-new suite of educational resources on our website, which we kicked off with an informative Facebook Live event (now available as a video on our site) featuring Lieutenant Colonel Joshua Nelson, who has ulcerative colitis, and Meena Prasad, MD, director of inflammatory bowel disease at the Atlanta VA Medical Center.

“Before building this initiative, the Foundation conducted an assessment during which we talked to patients and providers to explore the needs of the veteran community,” says Catherine Soto, the Foundation’s senior director of patient education and support. “We also entered into a partnership with the U.S. Department of Veterans Affairs (VA) in our efforts to engage and support veterans with IBD.”

Our new online resources include tips on how to navigate the VA healthcare system, why you might need a traveling veteran consult (a process that ensures continuous care if you move), and where to find a mental health professional who can help you cope with IBD-related stressors.

Visitors to our site can also view videos including the above-mentioned Facebook event, another featuring Air Force veteran and IBD patient Renee Gaither, and one with Lieutenant Colonel Anish Patel, DO, director of the IBD Center at Brooke Army Medical Center in San Antonio.

As part of this initiative, we’re also now offering a support group option for veterans with IBD. “We wanted to create a space for veterans to come to the Foundation and understand that there are others like them,” says Soto. “The message: You are not alone."

State graphics - step therapy
Fighting for access to better care: 

Step therapy is an insurance protocol that requires a patient to try and fail one or more insurer-preferred treatments before covering the treatment that the patient and their provider think is best. This process often delays effective care and could endanger patients. Thanks to our volunteer-fueled efforts, step therapy reform legislation passed in 2021 in Arizona, Arkansas, California, Nebraska, and Oregon, bringing the total number of states with step therapy reform to 31 plus the District of Columbia. Learn more about our efforts to bring step therapy reform to every single state and ultimately get federal legislation enacted at Step Therapy: An Obstacle Course to Optimal Health.

Veteran man
Our new resources make it easier for veterans to access treatment and specialized support.
VA Partnership
The Foundation’s VA partnership targets the nearly 70,000 veterans living with Crohn’s disease or ulcerative colitis.
IBD Help for Heroes
New suite of educational resources helps veterans find the right support.

If you’re a veteran with IBD, finding the right information and support can sometimes be challenging. That’s why on Veteran’s Day 2021, we launched a brand-new suite of educational resources on our website, which we kicked off with an informative Facebook Live event (now available as a video on our site) featuring Lieutenant Colonel Joshua Nelson, who has ulcerative colitis, and Meena Prasad, MD, director of inflammatory bowel disease at the Atlanta VA Medical Center.

“Before building this initiative, the Foundation conducted an assessment during which we talked to patients and providers to explore the needs of the veteran community,” says Catherine Soto, the Foundation’s senior director of patient education and support. “We also entered into a partnership with the U.S. Department of Veterans Affairs (VA) in our efforts to engage and support veterans with IBD.”

Our new online resources include tips on how to navigate the VA healthcare system, why you might need a traveling veteran consult (a process that ensures continuous care if you move), and where to find a mental health professional who can help you cope with IBD-related stressors.

Visitors to our site can also view videos including the above-mentioned Facebook event, another featuring Air Force veteran and IBD patient Renee Gaither, and one with Lieutenant Colonel Anish Patel, DO, director of the IBD Center at Brooke Army Medical Center in San Antonio.

As part of this initiative, we’re also now offering a support group option for veterans with IBD. “We wanted to create a space for veterans to come to the Foundation and understand that there are others like them,” says Soto. “The message: You are not alone."

State graphics - step therapy
Fighting for access to better care: 

Step therapy is an insurance protocol that requires a patient to try and fail one or more insurer-preferred treatments before covering the treatment that the patient and their provider think is best. This process often delays effective care and could endanger patients. Thanks to our volunteer-fueled efforts, step therapy reform legislation passed in 2021 in Arizona, Arkansas, California, Nebraska, and Oregon, bringing the total number of states with step therapy reform to 31 plus the District of Columbia. Learn more about our efforts to bring step therapy reform to every single state and ultimately get federal legislation enacted at Step Therapy: An Obstacle Course to Optimal Health.

Veteran man
Our new resources make it easier for veterans to access treatment and specialized support.
VA Partnership
The Foundation’s VA partnership targets the nearly 70,000 veterans living with Crohn’s disease or ulcerative colitis.
Fundraising and Donors
Special events and major contributions that support our crucial work