Thursday, January 28, 2016

Research firm looking for feedback from Crohn’s Patients in paid study

Shapiro+Raj, a medical market research firm, wants to talk with individuals with Crohn’s Disease as part of a paid, 60-minute phone with internet discussion aimed at facilitating understanding of your journey with Crohn’s Disease.

Participation is confidential, for research purposes ONLY. It is not related with sales. They follow the deidentification standard under HIPAA, as well as other security and privacy measures.


This is NOT a clinical trial. Participation will not involve any change to your treatment regimen. And they are specifically looking for Crohn’s patients who have never used a Biologic.


There is a considerable honorarium included for completion of a study, a payment of $125.00.


Slots available from Tuesday, February 2 to Thursday February 4.


To see if you qualify and to set up a convenient time, please call 312-321-8102. Reference project #683-909. Or visit:
http://bit.ly/1P0deUv
Or send us an email to Info@JCCSG.org with the subject: 'Shapiro+Raj Study', and will have them contact you.

Thursday, January 14, 2016

A loss to the IBD world, Dr. Present

It is with regret and sorrow that we wish to inform you that Dr. Daniel H. Present passed away at the age of 81.
The pain is still raw, and the loss so profound. Dr. Present was a strong advocate for our noteworthy organization JCCSG. He has been a source of advice, guidance, and affection ever since our inception. We vividly recall the time we met with him in year 2011, prior to founding our organization. Dr. Present spent over an hour with us, providing us with sound advice how to open this organization. His guidance and encouragement keep us going to this day.

Dr. Present, or Dan as he was fondly called, entered private practice in 1964. He quickly began to focus on the treatment of Crohn's disease and ulcerative colitis, bringing clinical trials into clinical practice. A brilliant, innovative, and charismatic figure, Dr. Present has played an integral role in the treatment of the disease, serving as a world renowned Gastroenterologist at Mount Sinai Hospital for over 54 years. He paved the way for the currents modes of treatments for Crown's disease.
Dr. Present took immense pleasure in his care and dedication for his patients. He derived joy from sparing his patients the pain, discomfort, and humiliation of inflammatory bowel disease by finding the right treatment. He tried to prevent surgery by all means whenever there was another possible medical solution. He spent many, many hours with his patients, more than any HMO would have allowed. He sat at their bedside and visited them late at night when they fell ill, and he shared their joy when they recovered.

Nothing made Dr. Present happier than seeing a college student returning to school or a former patient feeling well enough to plan a wedding or bear a child. The numerous people he has helped are his everlasting memory, and his many achievements in the field of medicine will be his immortal presence. May his virtuous soul rest in peace.

Funeral services will be held on Today, Thursday at 12:00pm at "The Riverside", 180 West 76th St., New York, NY 10023.

Friday, January 1, 2016

​Crohn's & Colitis Event, March 2nd, in Lakewood NJ

 
In response to requests from the people in Lakewood, New Jersey, we are proud to announce our next “Crohn’s and Colitis Education & Support Event”!
 
This event will be held in Lakewood, on March 2nd, in conjunction with, and sponsored by the Lev Rochel Bikur Cholim of Lakewood.


 
 
Please reserve the date. There will be more details to follow

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!