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Thursday, December 10, 2015

Survey: The impact of illness and attitudes towards genetic testing for IBD in the Ashkenazi Jewish population

Dear Member,

We would encourage everyone to take this short survey about “The impact of illness and attitudes towards genetic testing for inflammatory bowel disease (IBD) in the Ashkenazi Jewish population”. Both individuals with IBD and their unaffected family members are encouraged to participate.


http://j.mp/1iMbTXy


 The survey looks to assess the following:
  1. How living with IBD impacts a patient and their family members.
  2. How individuals receive their information about IBD and whether they are satisfied with the quality of education about IBD they receive.
  3. Attitudes towards genetic testing for IBD genes associated with developing IBD, treatment outcomes and testing of unaffected family members.
 
The purpose of this research study is to see how living with IBD impacts a patient and their family members, how individuals receive their information about IBD (At the Where do you currently receive information about IBD? you can check by Other and write in JCCSG… Thanks…) and whether they are satisfied with the quality of education on the disease they receive. Finally, the study looks to access attitudes towards genetic testing for IBD genes associated with developing IBD, treatment outcomes and testing in unaffected family members. You are being asked to take part in a research study because you are 18 years or older, of Ashkenazi Jewish descent and either yourself or your family members have a diagnosis of IBD.
 
You will be asked to complete an anonymous survey. Your participation in this study will take about 5 minutes. We expect that 100 people will take part in this research study.
 
You can choose not to answer any question you do not wish to answer. You can also choose to stop taking the survey at any time.
 
The possible risks to you in taking part in this research are:
  • Feeling uncomfortable answering questions about yourself or your family members…
 
The possible benefits to you for taking part in this research are:
  • Help researchers and clinicians working with IBD patients to understand the impact of living with or having a family member with IBD, as well as guiding what information may help those diagnosed with IBD. Additionally, helping to determine the communities desire for genetic testing in the future.
 
To protect your identity as a research subject, no identifiable information will be collected.
 
If you have any questions about this research, please contact the Researcher, Emily Boniferro, MSGC Candidate, at
(212) 824-9085.

A Freilichen Chanukkah!

Thursday, December 3, 2015

Baruch Dayan Ha’Emes

We are deeply saddened by the news of Mr. Avrohom Kornbluth's passing, father of our dear friend, Doctor Asher A. Kornbluth.

Dr. Kornbluth is sitting Shiva at 1414 Oakwood Ave. Lakewood, NJ 08701. Getting up on Motza Shabbos.
Phone Number:
732-363-5341

If you want, you can reply to us with your condolences words and we will forward it to him.

HaMakom Yenachem Et'chem B'toch Shar Avay'lay Tzion vee'Yerushalayim. (May the Omnipresent comfort you among the mourners of Zion and Jerusalem).

Thursday, November 26, 2015

Support Groups

In response to inquiry and request from our members, we will be launching support groups where we can support each other through often difficult times. Sometimes even exchanging a recipe with someone in the same boat has a different flavor…
 
It will be a text message group and anonymous, if preferred.
 
If you would like to join, please send an email to Info@JCCSG.org with some basic information: (phone number to be added, Pseudonym or initials to be used, location). We hope to set up in person gatherings in the future. If you would like, you can add a brief summary at the stage of the illness, and will try to group up accordingly.
 
If you don’t have text messaging but would still prefer to join a group, please feel free to reply and we will notify if and when there will be a gathering in your area.
 
The groups will be divided as follows:
  1. For women suffering from Crohn’s or Ulcerative Colitis
  2. For Women with TPN
  3. For women with children afflicted with IBD
 
We will set up a support group for men as well, if there is an interest.

Monday, November 23, 2015

Mazel Tov Rabbi Hager

לחיי"ם טובים ולשלום! המאי"ר לארץ!

בשמחה רבה הננו מברכים ועונים, לכבוד הרב המפואר שלשלת היוחסין פרי צדיק עץ חיים נטעי נעמנים, מוכתר בחכמה ובינת נבונים, במעלות ומדות אשר חכמים מונים, עושה צדקה וחסד באמיץ כח וכביר אונים, מקבל כל אדם בסבר פנים, גן ההדסים ערוגת הבושם, ותיק ועושה חסד לכולנו אהוב ונחמד בקהל עדת אבירים
חיים שיש בו אהבת תורה וחסד והרחבת ארגונינו במעשיו הכבירים ורב כח
ידיד נפש כל חי המשליך נפשו מנגד יומם ולילה לטובת החולים בלבב דוי
ידיו רב לו בהתייסדת והקמת מפעלינו יומם ולילה באהבה עזה עד בלי די
מסור בכל נפשו לכל חולי ישראל ומקבלם בספר פנים מאירים
מה רבו מעשיו ופעולותיו הכבירים, למען אחינו בני ישראל אשר לישועה מצפים
אש החסד והמעש אשר לא למענו יעש, נודע בשמו הטוב גברא יקירא
יקר רוח איש חמודות, רב תבונות, נועם המדות, בן איש חי
רודף צדקה וחסד תמיד ותדירה, בלבו הטוב בא לעזרה, לכל ישראל בצר

ה"ה ידיד ה' וידיד כל בית ישראל, כבוד שמו מפארים

הרב חיים מאיר האגער שליט"א
יושב ראש דמפעלינו המפוארה


לרגל שמחת נשואי בתו תחי' למזל טוב ובשעה טובה ומצלחת
עב"ג הבחור החתן תמים למעלות ולמידות, פרי קודש הילולים
 הרב משה אליקים בריעה ווייס שליט"א
בן כ"ק הרה"צ מוהר"ר מאיר אלעזר ווייס שליט"א, אדמו"ר מ'ספינקא
 ***
והברכה אחת, ברוב נחת, כגפן פורחת, לעטרת זקינים, מעלת כבוד הרבנים, השמחים בגיל ורננים, בשמחת בני בנים
לאביו הגה"צ אב"ד וויזניץ מאנסי שליט"א
בן כ"ק אדמו"ר הגה"ק מ'וויזשניץ-מאנסי שליט"א
ולחותנו הגה"צ אב"ד פאלטיטשאן-בענסענהורסט שליט"א

***


החתונה תתקיים היום
בבית המדרש הגדול לבוש מרדכי - שיכון וויזשניץ, מאנסי
25 Phyllis Terrace, Monsey NY 10952
***

ויהא רעוא שהזיווג יעלה ויפה להעמיד דורות ישרים, ע"ד אבותיו הקדושים והטהורים, ויהא הבנין עדי עד לדור דורים, וירוה כבוד הרב שליט"א תענוג ונחת ממנו ומכל יו"ח היקרים, וכל נטיעות שנוטעין ממך יהי' כמותך דורות ישרים ומבורכים, ועוד רבות בשנים ימשיך בפעליו הכבירים, מתוך הרחבת הדעת ושפע רב למישרים, עדי נזכה וישמע קול חתן וקול כלה בחוצות ירושלים ובערים, בב"א

הכ"ד המשתתפים בשמחתו, ומברכים לעומתו, בהוקרה והערכה, בשיר וקול תודה
כל הנהנים מפעולתך

גדול העונה יותר מן המברכים, ידידך עוז כל הימים
 יואל דרוממער
מייסד ומנהל
 
We would like to wish a hearty Mazel Tov to Rabbi Chaim Mayer Hager, JCCSG Administrator/Medical Referrals, upon the wedding of his daughter. Rabbi Hager is someone who has put his heart and soul into assisting Crohn’s and colitis sufferers for many years.
May he have much Nachas from this couple and from his whole family along with health, wealth and abundant happiness. Let him be Zoche to fulfill his mission of improving the quality of life for  people  affected by Crohn's and Colitis and for their families with success and Brucha at all times.

The Wedding is tonight in the big Viznitzer Shul, 25 Phyllis Terrace, Monsey, NY 10952.


With best wishes always
Yoely Drummer
Founder & Executive Director

Monday, November 9, 2015

'Road to Prevention' Event, TONIGHT, Nov. 9, in BP

We are pleased to invite you to the Symposium for education and support for sufferers of Crohn’s Disease and Ulcerative Colitis.

This important  event, sponsored by Mount Sinai Hospital, is entitled ‘The
Road to Prevention' and is set to bring you insight on the history of Crohn's, it's patterns, and possible prevention.

We look forward to welcome you at 7:15pm. The lectures are set to begin in a timely fashion, so please be punctual.

The Road To Prevention
TONIGHT - Monday פרשת תולדות,
November 9, 2015
The Spinka Hall, Boro Park
1466 56th Street
Brooklyn, NY 11219

There will be a panel discussion to address questions that have been submitted prior to the event. Please submit any questions you may have and a selection of those questions will be responded to: Phone:
845-670-4522,
Email:
RoadToPRevention@JCCSG.org

Non affected family members are invited and very welcome to attend. Familial support and awareness are important to those afflicted with this disease.
It is also critical to we have family members of IBD Sufferers participate in this study as a means of prevention. Please help us help you with letting your family know about this study.  Pass the invitation or send us their email address to be added to our mailing list.

By navigating the "Road To Prevention” we can prevent future suffering.



Thursday, October 22, 2015

"ROAD TO PREVENTION!" Event, Nov. 9, in BP - AD

Please See attached our first ad regarding our Event on Monday, פרשת תולדות, November 9, 2015. At the Spinka Hall, 1466 56th Street, (Borough Park) Brooklyn NY 11219. Starting at 7:15pm Sharp!

Feel free to post it at your Gastroenterologist's office or/and local medical center, Of course with permission..


Monday, October 19, 2015

"ROAD TO PREVENTION!" Event, November 9, in Brooklyn

Dear Member,
 
We are pleased to invite you to our eighth “JCCSG Education Symposium and Support Event". A very informative and insightful “ROAD TO PREVENTION” event in partnership and sponsored by Mount Sinai Hospital. Its goal is to raise awareness and give people an inside scoop of the ongoing research program.
 
It will take place on Monday, פרשת תולדות, November 9, 2015. At the Spinka Hall, 1466 56th Street, Brooklyn NY 11219. Starting at 7:15pm Sharp!
 
We will be discussing:
  • The course of Crohn's disease and how it can behave‎
  • Genetics of IBD in the Ashkenazi Jewish populationH
  • ow diet and our environment affect the bacteria inside our bodies
  • Why prevention of IBD is possible
  • Fertility and future generations
  • And how you can help???
  • Followed by a 9 Doctor Panel, and question and answer session
 
Featuring:
Marla Dubinsky, MD, Chief Pediatric Gastroenterology and Hepatology, Co-director Susan and Leonard Feinstein IBD Center, Icahn School of Medicine, Mount Sinai Hospital
‎Asher A. Kornbluth, MD, Clinical Professor of Medicine, Gastroenterology, Mount Sinai Hospital. Founder and annual course director of the Mount Sinai IBD Consultants Course
Jean-Frédéric Colombel, MD, Co-director Susan and Leonard Feinstein IBD Center, Icahn School of Medicine, Mount Sinai Hospital
Keith Benkov, MD,  Associate Professor Pediatrics, Gastroenterology, Icahn School of Medicine, Mount Sinai Hospital
Judy H Cho, MD, Professor Medicine, Gastroenterology and Professor Genetics and Genomic Sciences
Joana Torres, MD, Post-Doctoral Fellow Mount Sinai School of Medicine
Inga Peter, PhD, Associate Professor, Department of Genetics and Genomic Sciences. Member, The Charles Bronfman Institute for Personalized Medicine‎, Icahn School of Medicine, Mount Sinai Hospital
Jeremiah Faith, PhD, Assistant Professor, Department of Genetics and Genomic Sciences, Assistant Professor, Medicine, Clinical Immunology‎, Icahn School of Medicine, Mount Sinai Hospital
Jose Carlos Clemente, MD, Assistant Professor Genetics and Genomic Sciences
 
Stay Tuned for our future updates and feel free to contact us with all your concerns and comments. By phone at our designated number 845-670-4522 or email.
 
We might provide transportation from Williamsburg, Please call 845-670-4522 or email us to RSVP.
 
Help us spread the word. Should you know someone who might benefit and is not on our mailing list forward this email.
 
We would be delighted to hear from you. Your participation is much appreciated!

Tuesday, September 22, 2015

A Git Gebencht Yur! Yom Kipur info., Have an Easy fast!

We at עול"ם - עזרה וחיזוק לחולי מעיים ~ The Jewish Crohn's & Colitis Support Group (JCCSG) would like to wish you and your family again, a good and sweet, happy and prosperous year. A year of Nachas and Parnasah and all you need. And of course a Healthy year. May we all be inscribed and sealed in the Book of Life.
 
As a reminder, please discuss with your Rabbe/Rav/Dayan AND Doctor regarding your fasting, taking your medications, and/or about taking IV (Intravenous) fluids.
 
*
 
After we were asked by a lot of our members, we're sending a list of IV Center's provided by our heroic Chevra Hatzolah
 
YOU WILL NEED A PRESCRIPTION!!!
 
Williamsburg:
You have to register by calling Chevra Hatzalah’s special line: 718-534-5050 Ext. 0
 
Erev Yom Kipur (Starting the IV line):
  • Nadvarna Shul, 237 Lee Ave. – From 1:00pm till 3:00pm, and from 5:00pm till 6:30pm
Please call 347-231-9852 before you go
 
On Yom Kipur (IV Center):
  • ODA, 14 Heyward St. - from 10:00am till 4:00pm
  • Quality Health Center, 432 Bedford Ave. - from 10:00am till 4:00pm
 
Boro Park:
Erev Yom Kipur (Starting the IV line):
  • Bobov Shul, 1533 48th St. - from 1:00pm from 6:00pm
 On Yom Kipur (IV Center):
  • Bobov Shul, 1533 48th St. - from 8:00am from 7:00pm
  • Belz Shul, 1321 43rd St. - from 8:00am from 7:00pm
  • Statcare, 1270 51th St. - from 8:00am from 7:00pm
  • Brizdovitz Shul, 1721 58th St. - from 8:00am from 7:00pm
For house calls (Only if necessary) or for more info please call Bobov Bikur Cholim: 718-851-2500
 
Kiryas Yoel, Monroe:
 
Monsey:
 
New Square:
 
Montreal:
 
REMEMBER: The same Torah which commands us to fast on Yom Kippur tells us that "V’Nishmartem M'od L’Nafshotaichem" - "Take care of your health/guarding our health" is far more important.
 
Again, you need a prescription in order to get the IV, no exceptions! So please make sure to have it!
 
Have an easy fast!!!


Monday, September 21, 2015

Welcome to the new CCFA ​Regional Education and Support Manager!

We at the JCCSG‎ would like to welcome Alyssa Strauss‎ as the NEW Regional Education and Support Manager at the Crohn's and Colitis Foundation of America - CCFA, Greater New York Chapter, Overseeing NYC, Fairfield/Westchester, Long Island and Northern NJ.

Our team work with the CCFA goes back to the founding of our organization, and with their help we were able to launch our six Education and Support Symposiums.
We are especially grateful to Rhondell Domilici, Regional Director Metro New York/New Jersey/Philadelphia, and Michele Zellers, Executive Director, Greater New York Chapter.

It was nice seeing both, Alyssa and Michele yesterday at the CCFA 2015 Patient Symposium, and discussing future directions.

We wish Alyssa lots of luck and success, and we hope to work with her closely and continue to serve our IBD family with everything possible.


All the best!


Yoely Drummer
Founder & Executive Director

And all your friends at

עול"ם - JCCSG Inc.
Jewish Crohn's & Colitis Support Group ~ עזרה וחיזוק לחולי מעיים

Sunday, June 28, 2015

RE: ​NY State Restroom Access Act - The Ally's Law

GAM ZU L'TOVAH!!!

We have news... not what we were hoping for, but we have made good progress.

The bill passed in the Assembly on Wednesday the 24th, 134 Yea’s vs. 3 Nay’s. And it was delivered to the Senate. But, the Senate ended their session yesterday without voting on the Senate version of the Crohn's and Colitis Fairness Act - Restroom Access Act. They passed it into Rules Committee which is what they do with bills that did not get voted on. This means that if they choose to go back into session this fall it can come up again for a vote. Unfortunately, there is no guaranty they will do this. Typically they are only in session from January to June and then not again until next year. They will decide in the fall if they need to go back into session.

If they do not go into session until next January, the process must start again. However, the Sponsor of the bill in Assembly - Assemblywoman Paulin's office said the process would be much quicker this time. The sponsors would remain on the bill for both the Senate and House side and it will quickly sail through the Assembly. It was almost a unanimous vote in favor with only two nays (the third one is claiming it was a mistake of the clerk). Then it will go back to the Senate. It also passed the Senate Health committee with 14 yays, 2 yays with reservations and one absent. So the bill clearly is seen as a positive addition. There is just a lot of competition in getting it to the floor.

The CCFA is working tirelessly to continue having constituents reach out to the office of Senator Hannon - the sponsor of the Bill in Senate, and to the office of the Speaker of the Senate - Senator Flanagan, and in arranging meetings with Senator Hannon and Senator Flanagan.

In terms of timing, we should continue the push through the summer, and if we see them considering a fall session we will ramp it up then as well.

We should also all thank our Assembly people for voting for the bill. It is nice to let them hear appreciation after the fact. It can't hurt to continue to reach out to our Senators asking for support when the bill comes up although this may be better done when we get closer to a vote.

We will get this done... not as quickly as we hoped but it will happen! Thanks for all you are doing!

Monday, June 22, 2015

RE: ​NY State Restroom Access Act - The Ally's Law

Dear member,

We are down to the wire here and need a big push. This session of the NY State Senate and Assembly is coming to a close and our bill is up for a vote.

The Act has already been introduced in the Assembly and will be debated on the floor over this week. It will definitely be put up for a vote before this session ends (which was extended) and the office of the bill sponsor, Assemblywoman Amy Paulin feels confident that it will pass. It can never hurt to reach out still to offer your support of Bill A277 to your own legislators and to Assembly Speaker, Carl Heastie, at
518-455-3791, but not as urgent.

The urgent piece is on the Senate side. The Senate Speaker, John Flanagan, has not brought the Bill forward for a vote yet, as hoped for. So the most important Call to Action right now is to call the office of the acting Senate Speaker, John Flanagan,
518-455-2071 and urge him to bring S4918 forward for a vote ASAP. The Senate is not in session today but goes back in session tomorrow. This is a situation where everyone can call. He is the Speaker of the Senate and therefore represents all.

By calling Speaker Flanagan’s office you can say something like this: Hi my name is… I am calling to ask the Speaker to put the Crohn's and Colitis Fairness Act, Bill number S4918 on the agenda, As an IBD sufferer it is very important for me, and I support this bill.


Let’s make this happen!

Friday, June 19, 2015

RE: ​NY State Restroom Access Act - The Ally's Law

Dear Member,

Today is probably the last day in session; we would like to ask you to take a minute and call the office of the Assembly Speaker, Carl Heastie, at
518-455-3791 and ask that the Speaker should bring up Bill A277 for a vote.

You can say something like this: Hi my name is… I am calling to ask the Speaker to put the Crohn's and Colitis Fairness Act, Bill number A277 on the agenda, As an IBD sufferer it is very important for me, and I support this bill.
It takes just one minute, and only with our voices we feel very confident we can get this bill passed this year.

Please forward it to all your contacts! Thanks in advance. We will keep you updated.

Git Shabbos!

Tuesday, June 9, 2015

RE: ​NY State Restroom Access Act - The Ally's Law

Great news everyone...

The Restroom Access -- Crohn's and Colitis Fairness Act (
A277/S4918) has been introduced to the Senate and is up for a vote on June 17th!  Additionally, the bill is in review in the CODES Committee in the Assembly.  Now is the time to have all hands on deck, with a continuous ramp up using social media and e-blasts. We suggest that these next two weeks is the time to have all constituents call or email their legislators in support of this bill. Ask all your friends and family to call their legislators. The link below will help them find their Senator. It is ok if it is the same Senator as yours. The more voices the better. If you already reached out, it doesn't hurt to send a reminder email asking for their support on the 17th.

We have drafted a sample email below but feel free to use your own words. Then ask friends and family to do the same. It really is that easy. First locate your Senator by going to this link
http://www.nysenate.gov/senators and your Assemblyperson by going to this link http://assembly.state.ny.us/mem/search/ and put in your street address. Once you identify your Senator and Assemblyperson click on their name and there will be a place that says "contact me". That will generate an email form or address and then all you have to do is insert the following type of wording:

Dear ______________

I am a voter/constituent in your district and I am asking for your support of Bill A277/S4918, which enacts the "Crohn's and Colitis Fairness Act" providing Restroom Access. This bill would allow people with medical conditions that require urgent restroom use--such as the inflammatory bowel diseases (IBD) Crohn’s disease and ulcerative colitis--to use an employee’s-only restroom when a public one is not available and it is safe for the business to do so.

In NY State there are more than 100,000 people with these debilitating diseases. I am sure you can imagine how it must feel to be denied access to a bathroom when you so desperately need one. This Bill is important to me because... (I have IBD or am related to or friends with - whatever personal connection you wish to share).

Please support this bill and vote for it when it comes before you. If you need more information please feel free to contact the Jewish Crohn’s & Colitis Group (JCCSG) or visit http://jccsg.blogspot.com/2015/06/a-letter-sent-to-all-ny-assmeblymembers.html

Thank you,

Your name

As a sufferer from IBD, We have first-hand experience of the hardships that the patients of IBD go through. We are forced to schedule our day around the availability of restrooms. Every business trip or family vacation revolves around our condition. We experienced unimaginable physical and emotional pain every time we are rejected usage of employees’ restrooms in public places. Therefor we urge you to take a part in the process of the passage of A.277 and S.4918 this legislative session which would vastly improve your life and the lives of many others.

Email them, call their office or visit and ask for their support. With enough of our voices being heard we feel very confident we can get this bill passed this year and you will have been a part of the process!

Thanks in advance. We will keep you updated.

A letter sent to all NY Assmeblymembers and State Senators RE: ​NY State Restroom Access Act - The Ally's Law

Dear Honorable...
 
I am the founder and executive director of the ‘Jewish Crohn’s & Colitis Support Group’ (JCCSG) non-profit organization. Crohn’s disease and ulcerative colitis are chronic gastrointestinal tract diseases, which are collectively known as the Inflammatory Bowel Diseases (IBD). IBD causes inflammation of the gastrointestinal tract, most commonly in the small intestine and colon, which causes severe abdominal pain, fever, diarrhea, and bleeding. People who suffer from it often require immediate restroom use, and are at risk of developing anemia, liver disease, and colon cancer, among other fatal diseases.

On behalf of the members of our organization, I am humbly asking that your honor support the law
A.277, sponsored by Assemblywoman Amy Paulin (88th District), as well as the law S.4918, sponsored by Senator Kemp Hannon (6th District), the chairman of Senate committee on Health. This bill will require retail establishments that have public toilet facilities for their employees to also allow customers to use the facilities, if the customer suffers from an inflammatory bowel disease or other medical condition requiring immediate access to a toilet.

The “Crohn’s and Colitis Fairness Act” is also known as “
Ally’s Law,” named after Ally Bain. In 2005, Ally was a 14 year old girl from Illinois, suffering from Crohn's disease, who had a very unpleasant experience. She had gone shopping at a national clothing store with her mother, when she suddenly had an urge to use the bathroom. The public restroom was unavailable at the moment, and she asked to use the employee restroom but was denied access. As a result, poor Ally soiled herself. One can imagine the embarrassment and distress she felt. Ally vowed to dedicate her life to prevent this from happening again - to her or to anyone in a similar condition.

With the support of her family, friends, and her Illinois State Representative, Ally got a law passed in her state that requires businesses to make employee-only restrooms available to people with Crohn’s disease, ulcerative colitis, and other medical conditions that require immediate use of a toilet facility. Since then, the “Crohn’s and Colitis Fairness Act” law has been introduced and passed, largely by grassroots efforts, in the following 14 states: Colorado, Connecticut, Kentucky, Maine, Maryland, Massachusetts, Michigan, Minnesota, Ohio, Oregon, Tennessee, Texas, Wisconsin, and Washington. Several more states are now in the process of passing this bill, and there is support to propose a federal version of the same act.

The Crohn’s & Colitis Foundation of America (CCFA) estimates that 1.6 million American children, teenagers, and adults are suffering from IBD, including over 104,000 people in the state of New York. Inflammatory Bowel Diseases are currently incurable, and they are nationally recognized as substantial handicaps; Crohn’s disease and ulcerative colitis are considered disabilities under the “Americans with Disabilities Act Amendment Act of 2008.”

If and when “The Crohn’s and Colitis Fairness Act” will pass in New York, it will be an immense relief for the over a hundred thousand New Yorkers who are suffering from this condition, who, in addition to being subject to chronic pain and emotional distress, find themselves in unpleasant and distressful situations when they are in public places and need to use the bathroom immediately.

As a sufferer from IBD, I have first-hand experience of the hardships that the patients of IBD go through. I am forced to schedule my day around the availability of restrooms. Every business trip or family vacation revolves around my condition. I experience unimaginable physical and emotional pain every time I am rejected usage of employees’ restrooms in public places. I therefor urge you the passage of A.277 and S.4918 this legislative session which would vastly improve my life and the lives of many others.

Respectfully,
Yoely Drummer
Founder & Executive Director
עול"ם - JCCSG Inc.
Jewish Crohn's & Colitis Support Group ~ עזרה וחיזוק לחולי מעיים

Thursday, May 28, 2015

NY State Restroom Access Act - The Ally's Law

WE NEED YOUR HELP to pass the NY State Restroom Access Act, a bill that will allow people with qualifiable medical conditions, like inflammatory bowel disease (IBD), access to employee restrooms in businesses.

Two years ago, we asked you to join our campaign about the “The Restroom Access Act” is also known as "Ally's Law," we BH got a lot of people involved, but sadly at the end it failed again due to some wording issues.

A few month ago, on January 7, 2015, bill
A277-2015 was introduced again by Assemblywomen Amy Paulin (88th District), an act to amend the public health law, in relation to enacting the Crohn's and Colitis fairness act, this “The Restroom Access Act” is also known as "Ally's Law," so named for Ally Bain, a teen that was spurred to action after she experienced an IBD-related accident. Ally was denied access to an employee-only restroom while shopping. Ally was instrumental in getting the first version of the Restroom Access.

The Restroom Access Act is a law passed in several states that requires retail establishments that do not have public restrooms to provide access to employee-only restrooms to patrons in need. This can include people who have inflammatory bowel disease (IBD), irritable bowel syndrome (IBS), pregnant women, and those who have other chronic conditions.

The Restroom Access Act has been passed in a total of fifteen states: Colorado, Connecticut, Illinois, Kentucky, Maine, Maryland, Massachusetts, Michigan, Minnesota, Ohio, Oregon, Tennessee, Texas, Wisconsin, and Washington. The act has been passed in these states largely as result of grassroots efforts. There is support for a federal version of the act, and several other states have similar laws currently in the works.

In Senate it was introduced as bill
S4918-2015 by Senator Kemp Hannon, chairman of the prestigious Senate committee on Health.

One of the easiest things to do to generate support for Bill A277/S4918 – The Crohn’s and Colitis Fairness Act – Restroom Access, is to send an email to your legislators.
It is very simple to do. First locate your Senator by going to this link
http://www.nysenate.gov/senators and your Assemblyperson by going to this link http://assembly.state.ny.us/mem/search/ and put in your street address. Once you identify your Senator and Assemblyperson click on their name and there will be a place that says "contact me". That will generate an email form or address and then all you have to do is insert the following type of wording:

Dear ______________

I am a voter/constituent in your district and I am asking for your support of Bill A277/S4918, which enacts the "Crohn's and Colitis Fairness Act" providing Restroom Access. This bill would allow people with medical conditions that require urgent restroom use--such as the inflammatory bowel diseases (IBD) Crohn’s disease and ulcerative colitis--to use an employee’s-only restroom when a public one is not available and it is safe for the business to do so.

In NY State there are more than 100,000 people with these debilitating diseases. I am sure you can imagine how it must feel to be denied access to a bathroom when you so desperately need one. This Bill is important to me because...
(I have IBD or am related to or friends with - whatever personal connection you wish to share).

Please support this bill and vote for it when it comes before you. If you need more information please feel free to contact the Jewish Crohn’s & Colitis Group (JCCSG) or visit http://jccsg.blogspot.com/2015/05/ny-state-restroom-access-act-allys-law.html

Thank you,

Your name


A simple thing like this from many of us can be what it takes to get the Bill passed. Let's blanket NY State with requests for support of this necessary Bill. Please let one of us know if you are able to do this and we will keep track of all the legislators reached.

If you think you can or know someone who can help us out achieving this, please contact us.



A277-2015 Page 1


A277-2015 Page 2
S4918-2015 Page 1
S4918-2015 Page 2
 

Thursday, May 14, 2015

Road To Prevention Event #1 * Thanks!!! What's Next...???

Dear Member,

We are grateful that you made the effort to attend Sunday’s event. It is only with your active participation that it was a resounding success. 


We received a lot of contact information sheets which is a wonderful start toward this important initiative.


We hope to host more events as well as continue our media campaign to bring attention to this program to interested parties. Stay tuned for the future notices regarding upcoming events in your area.

If you are willing to participate in the study, please find the attached consent form. You can learn more about the study, and how you and your family can help. Please complete it and return to
roadtoprevention@mssm.edu or to roadtoprevention@JCCSG.org. For more info feel free to call 212-824-9078.

A special request to the People from Monsey, New Square and Kiryas Yoel - Monroe: We will arrange a local site to collect specimens to spare you the inconvenience of traveling to Mt Sinai. Please get back to us ASAP so that we may properly coordinate.


***

CD's and DVD’s will be sold in the future; please expect further details.


Please feel free to refer any Crohn's or Colitis sufferer who you think may benefit from our support.


***
Right to Left: Inga Peter, PhD. - Jeremiah Faith, PhD. - Dr. Jean-Frédéric Colombel, MD. - Dr. Joana Torres, MD. - Dr. Asher A. Kornbluth. MD, - Dr. Bruce E. Sands, MD. - Dr. Marla Dubinky, MD. - Dr. Keith Benkov, MD. - Dr. Judy H Cho, MD. - Dr. James F. Marion, MD. - Dr. Jose Carlos Clemente, MD. - Yoely Drummer, JCCSG Founder & Executive Director. - R' Eluzer Dovid Follman, JCCSG Vice President of Communications

In closing, we want to take a moment to express our gratitude to individuals who gave of their time and expertise-




Dr. James F. Marion
Dr. James F. Marion, MD, Professor of Practice of Medicine, Gastroenterology, ‎Icahn School of Medicine, Mount Sinai Hospital, for standing at our side at all times. Your skill and tact has added much to the sensitivity of the topic.

The extraordinary success of our program was due to our talented presenters:


Dr. Bruce E. Sands
Dr. Bruce E. Sands, MD, Chief, Henry D. Janowitz Division of Gastroenterology, ‎Icahn School of Medicine, Mount Sinai Hospital, 
Dr. Asher A. Kornbluth

Dr. Asher A. Kornbluth, MD, Clinical Professor of Medicine, Gastroenterology, Mount Sinai Hospital. And Founder and annual course director of the Mount Sinai IBD Consultants Course

Inga Peter, PhD


Inga Peter, PhD, Associate Professor, Department of Genetics and Genomic Sciences, Member, The Charles Bronfman Institute for Personalized Medicine‎, Icahn School of Medicine, Mount Sinai Hospital

Jeremiah Faith, PhD
Jeremiah Faith, PhD, Assistant Professor, Department of Genetics and Genomic Sciences, Assistant Professor, Medicine, Clinical Immunology‎, Icahn School of Medicine, Mount Sinai Hospital

Dr. Jean-Frédéric Colombel
Dr. Jean-Frédéric Colombel, MD, Co-director Susan and Leonard Feinstein IBD Center, Icahn School of Medicine, Mount Sinai Hospital

Dr. Keith Benkov, MD, Associate Professor Pediatrics, Gastroenterology, Icahn School of Medicine, Mount Sinai Hospital

Dr. Judy H Cho, MD, Professor Medicine, Gastroenterology and Professor Genetics and Genomic Sciences


Dr. Joana Torres, MD, Post-Doctoral Fellow Mount Sinai School of Medicine


Dr. Jose Carlos Clemente, MD, Assistant Professor Genetics and Genomic Sciences


Dr. Marla Dubinsky
Last but certainly not least, Dr. Marla Dubinsky, MD, Chief Pediatric Gastroenterology and Hepatology, Co-director Susan and Leonard Feinstein IBD Center, Icahn School of Medicine, Mount Sinai Hospital, who from the very first time we met, has coordinated and worked together with us, assisting us in our success.

An extra special thanks to two individuals who took upon themselves to liaison this special study with the subjects. They have been (and are) instrumental to the success of our endeavors:
Harav Rabbi Chaim Mayer Hager, JCCSG Administrator.
R' Eluzer Dovid Follman, JCCSG Vice President of Communications..


Thanks to Yossi Steinmetz of YES Studios and his wife for devoting their precious time. Yossi can be reached at
718-576-1769 - yestudios@gmail.com - www.yossisteinmetz.com.

We thank you again, our very dear members, for enhancing the event.

By navigating the "road to prevention" together we can save our future generations.


All the best!


Yoely Drummer

Founder & Executive Director
​On behalf of The Road To Prevention team at עול"ם - JCCSG Inc.
עזרה וחיזוק לחולי מעיים - Jewish Crohn's & Colitis Support Group

Friday, May 1, 2015

"ROAD TO PREVENTION!" Event, May 10, in Monsey *Update #3*

Dear member,

Here we are with updated details regarding the upcoming “ROAD TO PREVENTION” event in partnership and sponsored by Mount Sinai Hospital.

This "Ladies Only" education program will take place on Sunday, פרשת בהר-בחוקותי, May 10, 2015. At the new Vilchovitz Hall (former Yeshiva of Spring Valley, Boys School), 230 Maple Ave., Monsey, NY 10952.

  • ​​
    ​​
    ​​
    Welcome and Introduction:
    7:15pm Sharp!
  • Program Moderator:

​​
James F. Marion, MD, 
Professor of Practice of Medicine, Gastroenterology, ‎Icahn School of Medicine, Mount Sinai Hospital
  • Mount Sinai IBD center history: the house Dr. Crohn's built:
Bruce E. Sands, MD,
Chief, Henry D. Janowitz Division of Gastroenterology, ‎Icahn School of Medicine, Mount Sinai Hospital
  • The course of Crohn's disease and how it can behave:
Asher A. Kornbluth, MD,
Clinical Professor of Medicine, Gastroenterology, Mount Sinai Hospital
Founder and annual course director of the Mount Sinai IBD Consultants Course
  • Genetics of IBD in the Ashkenazi Jewish population:
Inga Peter, PhD,
Associate Professor, Department of Genetics and Genomic Sciences
Member, The Charles Bronfman Institute for Personalized Medicine‎, Icahn School of Medicine, Mount Sinai Hospital
  • How diet and our environment affect the bacteria inside our bodies:
Jeremiah Faith, PhD,
Assistant Professor, Department of Genetics and Genomic Sciences
Assistant Professor, Medicine, Clinical Immunology‎, Icahn School of Medicine, Mount Sinai Hospital
  • Why prevention of IBD is possible:
Jean-Frédéric Colombel, MD, 
Co-director Susan and Leonard Feinstein IBD Center, Icahn School of Medicine, Mount Sinai Hospital
  • How can you help?:
Marla Dubinsky, MD,
Chief Pediatric Gastroenterology and Hepatology,
Co-director Susan and Leonard Feinstein IBD Center, Icahn School of Medicine, Mount Sinai Hospital
  • ​​
    Followed by a question and answer, Eleven doctors panel, with the additional following professors in the field:
Keith Benkov, MD,  Associate Professor Pediatrics, Gastroenterology, Icahn School of Medicine, Mount Sinai Hospital
Judy H Cho, MD, Professor Medicine, Gastroenterology and Professor Genetics and Genomic Sciences
Joana Torres, MD, Post-Doctoral Fellow Mount Sinai School of Medicine
Jose Carlos Clemente, MD, Assistant Professor Genetics and Genomic Sciences

Please call us at 845-670-4522 or email us at
​​
RoadToPRevention@JCCSG.org
with your questions in advance as we will only be able to accept minimal questions at the event.


Again, we would like to take the opportunity to invite the non-effected family members of effected.
 It is highly regarded to have family members of IBD Sufferers participate in this study as a means of prevention. Please help us/yourself with letting your family know about it, and inviting them to join this symposium. By navigating the "road to prevention" together we can save our future generations.


We're working on providing transportation from Kiryas Yoel - Monroe, and New Square. Please call 845-670-4522 or email us to RSVP.


Help us spread the word. Should you know someone who might benefit and is not on our mailing list forward this email.

For any other comments and suggestions, please feel free to contact us anytime by phone at our designated number 845-670-4522 or email.

We would be delighted to hear from you. Your participation is much appreciated!