Jewish Crohn’s and Colitis Support Group
Our Mission: To provide Advocacy, Education, Food & Ostomy Gemach, Help, Information, Medical Referrals, Medication Traveling Help, Research and Support to the people of the Orthodox Jewish community who are suffering from Crohn's disease and Ulcerative Colitis; To improve the quality of life of children and adults affected by these diseases. And to spread awareness within the Jewish communities.
• 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 that mandates that all health insurers in the state provide coverage of ostomy supplies. And recently made the news about our key role in passing the "Crohn's & Colitis Fairness Act - NY State Restroom Access Act", also known as “The Ally's Law", in Assembly and in Senate, and recently signed by the governor of NY. This is a bill that will allow people with qualifiable medical conditions, like IBD, access to employee restrooms in the workplace. As Senator Simcha Felder wrote in his press release: "The strong and steady advocacy of the JCCSG has contributed greatly to bringing this legislation to the fore and I am proud to have played a role in helping them see the Fairness Act become a reality,". And told Vinnews.com "This bill is very important and very personal to me and while it wasn’t my idea once I was happy to come on board and provide my assistance in any way possible,” said Felder. “It just goes to show you that when they say ‘you can’t fight City Hall’ it just isn’t true. When dedicated people decide they want to do something and are persistent, they really can make things happen. The moral of the story here is that people should never give up.”
• Education, Over the past seven years we have arranged co-educational Symposiums, each with attendance between 100 and 300 people. Covering various areas in New York, New Jersey, and Maryland. As in Williamsburg, Borough Park, Crown-Heights (Parts of Brooklyn, NY), Monroe, NY, Monsey, NY, Lakewood, NJ, and Baltimore, MD. 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 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.
• Help the people and pay them their post-surgical respite services, after being released from the hospital we send them to convalesce, which makes the recuperation period much more tolerable.
• Information for individuals and families, especially those that were newly diagnosed, to empower the people to manage their disease, their spouse's disease, and their children's disease more successfully. We help families navigate Shidduchim, 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. We work on a daily basis with the Medical professionals to open lines of dialogues between patients and physicians, to promote better adherence to medications and other treatments. As lots of doctors are using us as the middleman between them and their patients in order to get everyone on the same page.
• Medication traveling help, help to arrange medication getting to their destination of the boys and girls who are learning/attending Yeshiva's and Seminars overseas.
• An Ostomy Support group and Supplies Gemach (free-loan fund) where we collect and borrow/give away Ostomy supplies. And connecting those Ostomates with others, helping them go through their challenges.
• Research, as we play a key role in an ongoing “Road to Prevention” study, 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. We arranged a few events for that, attended by a whole list of doctors.
• 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 and WhatsApp groups, separate for Men, Women, parents, and even spouses of IBD'ers where they share information to support each other through often difficult times, having a good laugh and even exchanging a recipe (Legal to the dieters...) 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 together. We had an outstanding Women’s Retreat! Where the participants got to leave their illness at the door and reconnect to their power for 3 days! They danced, celebrated, and Cried and Laughed together. They walked out with a breath of fresh air; ready to conquer whatever comes about with the new filled energy and self-awareness they received.
• 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.
• We are finalizing the details about opening a Food Gemach where people will be able to buy dietary food (mainly SCD - Specific Carbohydrate Diet type) for cost price. And hopefully, be able to help those who can’t afford it.
• More things in the pipeline: we are expanding to provide services such as Nutritinost specializing in IBD (an App which was just launched), Life Coaching, Coping skills, Emotional support, Cleaning help, Suppers, Babysitting, And more, for those needing to travel for endless appointments and ongoing hospital stays.
Office: 146 Spencer Street, Suite #5012 • Brooklyn, New York, 11205718.63.JCCSG (718-635-2274) • info@JCCSG.org • www.JCCSG.org
Our Goal: $200,000