FAQ

WHAT ADVOCACY HAVE WE DONE?
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. 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."
HOW DO PEOPLE GET EDUCATED?
Over the past five and a half years we have arranged co-educational Symposiums, each with attendance between 100 and 300 people. Covering various areas in New York and New Jersey, As in Williamsburg, Borough Park, Crown-Heights (Parts of Brooklyn, NY), Monroe, NY, Monsey, NY, Lakewood, NJ, and Baltimore, Maryland. 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.
WHAT INFORMATION DO WE SUPPLY?
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, formulating and sharing the correct medical information to all parties involved to help alleviate concerns.
WHAT INCLUDES IN MEDICAL REFERRALS?
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 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.
HOW DOES RESEARCH WORK?
We play a key role in an ongoing “Road to Prevention” Research 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.
WHAT TYPE OF SUPPORT DO PEOPLE GET?
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 together.
WHAT’S THE IMPORTANCE OF SPREADING AWARENESS?
We are 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.