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Trusting their Gut

Photography by Jill Lotenberg

The Crohn’s & Colitis Foundation Educates and Supports Those with Inflammatory Bowel Disease

By Debra Hazel

 

When working to eradicate any chronic autoimmune disease, the challenge is twofold: to research a cure, and to educate and assist those who already have the condition.

Founded in 1967 by Irwin M. and Suzanne Rosenthal, William D. and Shelby Modell, and Dr. Henry D. Janowitz, the Crohn’s & Colitis Foundation offers support to those with or caring for people with these inflammatory bowel diseases, while also supporting research to cure the conditions.

These autoimmune diseases are often misunderstood. Crohn’s disease is a chronic inflammatory condition of the gastrointestinal tract, and can affect any part of the gastrointestinal tract. Ulcerative colitis is a chronic inflammatory condition limited to the colon. Collectively, Crohn’s and ulcerative colitis are known as inflammatory bowel disease (IBD).

“This inflammation not only affects the gastrointestinal system, but often has impact on other systems, including the joints, the eyes and skin,” said Laura D. Wingate, senior vice president, education, support, and advocacy. “For many, the impact of Crohn’s and ulcerative colitis means full-body involvement.”

IBD affects an estimated 3 million Americans. While IBD is found throughout the general population, Caucasians are more likely to have the diseases, and it’s especially prevalent among Ashkenazi Jews. However, it’s increasing among African-Americans and Latinos.

The current theory holds that three components overlap to cause the disease: a genetic predisposition, the interaction of microbiomes in the gut and disregulation in the immune response, along with certain triggers in the environment. Treatments include medication to decrease inflammation, immune therapies and surgery. Many patients also work with their provider team on integrated approaches to disease management including diet, behavioral and emotional support.

“What makes the Crohn’s & Colitis Foundation unique is that we’re here to care for the people with the diseases while accelerating the pace of research to ensure we’re working toward cures and better diagnostic and treatment options,” Wingate said. “We’re making sure we inspire and engage patients through education, advocacy and research. We’re here to empower patients, making sure they have the education they need and that they feel part of the decision making in terms of our research programs and developing every aspect of our education and support material.”

The foundation maintains a significant library of educational and support materials which are available to all online through crohnscolitisfoundation.org.

“We strive to help the parents of a child with inflammatory bowel disease understand the disease as well as support these children all the way to their transition to adulthood,” Wingate continued. “We’re also here to support older patients, and the medical community.”

A diverse team of medical professionals is needed to help patients cope with the disease, including those who treat the symptoms as well as the psychological and nutritional support. The foundation connects patients with dieticians and nutritionists to help navigate how to modify their diets.

“It’s important to take care not just of the disease aspect, but also the emotional and physical aspects that come with a chronic illness,” Wingate said.

“I was fortunate to be made aware of the Crohn’s & Colitis Foundation very early in my disease journey,” said Zachary Kerr, president of M&R Management Co. “It’s wonderful to be involved in a community of IBD peers that are also looking to make a difference, and I know that the Foundation’s education and support programs make all the difference in patients’ ability to find quality care and be empowered to advocate for themselves.”

Because inflammatory bowel disease can affect every aspect of a patient’s life, it has an economic impact of $14.6 billion to $31 billion in direct and indirect costs, according to Wingate. As a result, advocacy is critical. The foundation relies on an extensive group of volunteer efforts to support their educational and lobbying efforts on the federal and state levels. The organization has 39 chapters around the United States.

The foundation supports cutting-edge studies at major medical institutions that are working on better diagnostic procedures, treatments and cures.

“Since our founding over 51 years ago we have invested over $350 million in IBD research,” said Andres Hurtado-Lorenzo, senior director, translational research, Crohn’s & Colitis Foundation. “The foundation is accelerating high-impact biomedical research by breaking down traditional barriers to patients’ data, funding and collaborations that help translate discoveries from the bench to the bedside, in our drive towards better treatments and cures.”

“As someone whose family has been personally affected by these challenging, lifelong diseases, I believe the research the Crohn’s & Colitis Foundation is doing to advance understanding and accelerate the pathway to better treatments and cures is vital,” said Howard Swarzman, vice president of Glenwood Management.

Much of the guidance on what to support comes from the volunteers, notes Rhondell Domilici, director of advancement. More than 200 volunteers – including patients and clinicians –support the development of the education, support and advocacy programs alone.

To continue that dynamic mission, the foundation is constantly leveraging investments to improve research and respond to patients’ needs. As technology has progressed, the organization has created online support groups, updated webinars, utilized social media and more to make information easily accessible to all, Wingate explained.

The foundation also coordinates with international organizations, sharing information and services. The latest partner is the China Crohn’s and Colitis Foundation, which is helping to translate some content into Mandarin.

“We link with every organization, connecting with their websites, to better serve the IBD community both in the U.S. and worldwide,” Wingate said. “In addition, our IBD Help Center, a call center of masters’ level specialists who answer patients’ and caregivers’ questions, can field questions in 170 different languages.”

The goal is to support not only those living with the day-to-day reality of IBD, but to help the community as a whole, Wingate noted.

“We’re here to help the patients, the caregivers, the young, the old,” she said. “We want to engage everyone in finding better treatment and future cures, and while we’re working toward that, the foundation is inspiring patients to be engaged to build out the programs and resources they need by contributing their thoughts and ideas. Great volunteers are helping to spread awareness and inspire others.”

The work done by the foundation is supported by thousands of volunteers across the country, who raise awareness and funds through events like the Take Steps walk, spin4 crohn’s & colitis cures, and special events. One of these important events — which is led by Stan Kleger, Howard Swarzman, and Zachary Kerr — is the Greater New York Chapter’s Annual Golf Outing on June 3 at the Deepdale Country Club in Manhasset.

“It’s events like these, supported by the passionate efforts of dedicated volunteers, that make our mission advancements possible,” Domilici shared.

“Taking a volunteer leadership position in the Greater New York Chapter’s Annual Golf Outing has been very rewarding,” said Stan Kleger, partner of Natlane Equities. “It’s empowering to share my personal story to not only raise awareness about the diseases, but to raise funds to support the foundation’s critical mission and help others with similar challenges.”

For more information on supporting the Crohn’s & Colitis Foundation through the Deepdale Golf Outing, please visit crohnscolitisfoundation.org/chapters/newyork/upcomingevents/special-events/golf-classic.