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was founded in 2011, by a group of sufferers of Crohn’s Disease and Ulcerative Colitis, to improve the quality of life of children and adults affected by these diseases. Since its founding, our organization has responded to more than new 1,500 calls. Patients from USA , Canada, London, Belgium, and Israel were helped and guided by us.
Inflammatory Bowel Diseases, known as Crohn’s Disease and Ulcerative Colitis are genetically complex (with Ashkenazi Jews having an incidence of the disease at 4-5 times the general population), chronic, painful conditions that have debilitating physical and psychological effects. Prejudicial assumptions and confusion creates even larger hurdles for our patients who grapple with cultural and psychological stereotyping. Yet, our patients try their best to have full lives and meet their responsibilities and the expectations of the community. Patients face special issues in coping with the symptoms and side effects of their IBD. Combine this with the cloak of shame and secrecy surrounding any chronic and genetic disorder in the Jewish communities and the outcomes for patients, are truly calamitous and actually life-threatening.
Spreading awareness within the communities, to reduce the stigma and fear associated with a genetic illness within the Jewish community. To decrease the sense of isolation and victimization often felt by chronic disease sufferers by opening up new avenues of communication and creating an enhanced sense of community and empowerment.
Yoely Drummer
Founder & executive director
• Advocacy, working with several groups toward helping to support the people reaching out to us. We were very instrumental in passing the New York State Ostomy Supplies Bill, a legislation which mandates that all health insurers in the state provide coverage of ostomy supplies. We are currently working hard again towards getting the NY State Restroom Access Act passed. Also known as “The Ally’s Law”, this is a bill that will allow people with qualifiable medical conditions, like IBD, access to employee restrooms in the workplace. It’s already a law in 16 states, unfortunately, it failed last year, but we’re already working for this year, and hopefully, it’ll pass.
• Information for individuals and families, especially those
that were newly diagnosed, to empower the people to manage
their disease, their spouses disease and their children’s disease
more successfully. We help families navigate Shidduchim (Jewish
arranged marriage), formulating and sharing the correct medical
information to all parties involved to help alleviate concerns.
• Medical referrals for a wide range of doctors in the field, expediting wait time for faster appointments, and easier access to top medical care. (See attached a few recommendation letters of
doctors..) We work on daily basis with the Medical professionals to open lines of dialogues between patients and physicians, to promote better adherence to medications and other treatments.
To demystify the diseases, surgical options, fertility and intimacy issues.
• Support in every aspect possible, we have several support groups for people with Crohn’s disease and ulcerative colitis, we have an up and running text group, where they share information support each other through often difficult times, having a good laugh and even exchanging a recipe with someone in the same boat has a different flavor… we arranged big support group gatherings, in addition to the local areas smaller support groups get togethers.
• Education, such as Lectures, over the past five and a half years we have arranged ten co-educational Symposiums, each with attendance between 100 and 300 people. Covering various areas in New York and New Jersey, Four were in Williamsburg, Brooklyn, NY, two in Borough Park, Brooklyn, NY, two in Monroe, NY, one
in Monsey, NY, one in Lakewood, NJ, and one in Crown-Heights, Brooklyn NY. Where we discussed awareness on IBD. How to treat it medically, advised by gastroenterologists and pediatric Doctors. Lectures on how diet can help, by nutritionists. Infertility and pregnancy, as well as the obstacles and ethical questions we face when it comes to Shidduchim (Jewish arranged marriage).
We can write several stories about how people were helped through our events, but the one that remains the starkest example of why we are needed, and highlights the degree of shame and secrecy associated with Crohn’s happened at our first education program in Williamsburg. Two young women walk into the room, look at each other and ask, “What are you doing here?” Turns out they are SISTERS and each of them has children with Crohn’s or Colitis. They have never talked about it to each other. Their parents knew but also wouldn’t share with their daughters that all the grandchildren were affected. By attending this education program, their lives and the lives of their children have been profoundly
changed for the better. This encouraged us and gave us impetus to move forward and arrange more symposiums. We also partnered with the Program for Jewish Genetic Health which a joint initiative between Yeshiva University and the Albert Einstein College of Medicine. Together we have launched an Online Learning Series about IBD.
Three of those events were “Road to Prevention” events, which we launched together with Mount Sinai Medical Center, specifically designated on how we can involve the Jewish community, specifically those of Ashkenazi European descent in an important
research study, a program dedicated to studying life before IBD. The Doctors of Mount Sinai believe that by working in this direction they hope to develop the means of prevention and ultimately a cure.
