Friday, October 24, 2014

JCCSG Event #6, Update #1

A Giten Erev Shabbos,

Here we are with our first update regarding our sixth "JCCSG Education Symposium and Support Event". 

Due to overwhelming demand, we have scheduled for the first time an inaugural "Ladies Only" education program, for patients, parents and caregivers with reference to current topics within Fertility and many more..

The event will take place on Monday, פרשת תולדות, November 17, 2014. at the Pointe Plaza Hotel, 2 Franklin Ave, Brooklyn NY 11249. Starting at 7:30 Sharp!

As in previous events, we will have educational presentations, regarding adults and Pediatric IBD.

We will have a Question and Answer session, led by a Three Doctor panel, moderated by a senior doctor! 

Please call us or reply by email with your questions in advance. 

For any other comments ans suggestions, -we want to hear!-feel free to contact us anytime by phone or email.

We look forward to keep you updated!



A Git Shabbos!

Thursday, October 2, 2014

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 Nachasand 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!!! So call your Doctor/General Doctor NOW!

Williamsburg:
On Yom Kipur (IV Center):

  • ODA, 14 Heyward St. - from 10:00am till 4:00pm
  • Quality Health Center, 432 Bedford Ave. - from 12:00pm till 4:00pm

To get the IV line started and for house calls (Only if necessary) or for more info please call Chevra Hatzalah special line: 718-534-5050

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, 1153 58th St. - from 8:00am from 7:00pm
  • Bobov 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 ask NOW your Doctor.

Have an easy fast!!!

Wednesday, September 24, 2014

NY State Ostomy Supplies Bill SIGNED INTO LAW!

Dear Member,

We are very excited to share with you this great update that Governor Andrew M. Cuomo signed yesterday (9/23/14) into law the New York State Ostomy Supplies Bill! a legislation which mandates that all health insurers in the state provide coverage of ostomy supplies. The legislation states that "every policy which provides medical coverage that includes coverage for physician services in a physician's office and every policy which provides major medical or similar comprehensive-type coverage shall include coverage for equipment and supplies used for the treatment of ostomies." The coverage will be subject to annual deductibles and coinsurance. This legislation marks an important first step in our effort to protect our patients’ rights to the medical supplies that they so desperately need.

Thank you to all who signed the petition and called the legislators & governor’s office!

We would like to thank the following people who have been instrumental in organizing the drive to pass this legislation, Without their determination this legislation would have likely stayed dormant, as it had in previous years,
Heidi H. Cross, MSN, RN, FNP-BC, CWOCN,
Donna J. Truland, BSN, RN, CWOCN,
Jody Scardillo, MSN, RN, ANP-BC, CWOCN,
Linda Pasto, MS, RN, CNE,
Diane Lipsey Watkin, LMSW, President Ileostomy Association of New York and Captain

And the great team at United Ostomy Associations of America
Susan Burns, Vice President
Doug Shefsky, Director
Colin Cooke, of Cooke Health Care Consultancy LLC, Consultant

We would also like to thank the Wound, Ostomy and Continence Nurses Society.

And we are so sorry if we overlooked you on our list! We hope to mention in the future. Please accept it as a personal thanks and apology.

Now, Let’s celebrate!!!

We would also like to share with you, there is a new Jewish group for Ostomates, please contact inspireanostomate@gmail.com to join the group.

A sweet and healthy new year to all of you!

Tuesday, September 23, 2014

L'Shana Tova!

We at עול"ם - ע'זרה ו'חיזוק ל'חולי מ'עיים ~ The Jewish Crohn's & Colitis Support Group (JCCSG) would like to wish you and your family a good and sweet, happy and prosperous year. a year of Nachas and Parnasah and all you need. A of course a Healthy year. May we all be inscribed and sealed in the Book of Life.

At this opportunity please accept our sincere appreciation for all your ongoing dedicated and concerned efforts enabling fulfillment of our mission to improve the quality of life of children and adults affected by Crohn's and Colitis, and their families. only with your continuous help we're able to go forward!

To wrap up the year we are currently in the final planning stage of our next event, we will be emailing you the information as soon its final!

A Kesiva V'Chasima Tova!

לשנה טובה! וכתיבה וחתימה טובה!

Friday, September 12, 2014

NY Ostomy Supplies Bill Now on the Governors Desk

A Giten Erev Shabbos,

We are very pleased to say that the Ostomy Supplies Bill has now been called up by the Governors office and is now on his desk. All it needs now is for him to sign it into law.

We asked you to write to his office in June and again at the beginning of last month, and we know that a number of you and your friends have done so. However, We are told that it would be good for him to hear from you and your family and friends again now, and this is quite urgent as he only has till September 23rd to sign the Bill into law, or to veto it.

Please help us clear the last hurdle; as before a simple message containing the following should suffice:Please sign into law Assembly Bill A10140 and Senate Bill S7893 that concern insurance coverage for the vital supplies that people who have undergone ostomy surgery must rely on.

The easiest way is to email the message to the following address: legislative.secretary@exec.ny.gov (This person will send your message to the appropriate Counsel to the Governor)

You may also contact the Governor's office by phone (518) 474-8390 or mail:
The Honorable Andrew M. Cuomo
Governor of New York State
NYS State Capitol Building
Albany, NY 12224

In the same time, as a reminder, if you live in New York, and did not sign the petition yet, please do it now, it takes less than a minute and it gives a boost for the campaign.
Even though you might not have an Ostomy B'H, but there so many others out there suffering of Crohn's disease or Ulcerative Colitis who are going through with that struggle, let’s try to help them!
Sign it here Petitioning Governor Cuomo to sign into law NY Ostomy Supplies Coverage Bill and send it to others to sign it as well.

Lastly, you could leave a message on his website at: www.governor.ny.gov by going to the site and clicking on 'contact'.

Contact us if you have any questions, thank you for all your help and support, we are almost there!

Sunday, August 31, 2014

Re: NY Ostomy Supplies Coverage Bill

To all our members:

As you know, we are waiting to hear that Governor Cuomo has signed the Ostomy Supplies Coverage Bill into law and we are reasonably confident that he will do so in the next several weeks. As we mentioned in our previous emails regarding this issue, the Bill covers all commercial insurances but not those that are state-sponsored.

The situation with regard to coverage by state-sponsored programs is as follows:

​​

  • MEDICAID
Traditional Medicaid covers ostomy supplies, albeit at relatively low reimbursement fee levels. However, on a progressive basis, beneficiaries are being moved into Managed Medicaid policies and we have heard that some of them may not cover ostomy supplies. If any of you or you know of Medicaid beneficiaries who have an ostomy but do not have coverage for their ostomy supplies please let us know.
​​

  • CHILD HEALTH PLUS
Surprisingly, this program for children whose families are of very limited means, does not cover ostomy supplies and never has. Although a last minute Bill requiring coverage was introduced at the end of the recent legislative session, it was not passed. We need examples of problems that this has caused to support asking the Governor to add coverage in his budget.
​​

  • HEALTHY NEW YORK
We now understand that this program is to continue but will only be available to small employers and not the self-employed. We have heard, however that it has extremely low utilization limits for ostomy.

If you or you know someone who had problems with adequacy of ostomy supplies coverage by any of the above programs, please let us know as soon as possible and with as much detail as possible. We have an opportunity to try to influence the people who are responsible for these programs and for a time have the services of a specialist in this field and there is unlikely to be another occasion when we have such a chance to improve coverage.


As a reminder, if you live in New York, and did not sign the petition yet, please do it now, it takes less than a minute and it gives a boost for the campaign. 

Even though you might not have an Ostomy B'H, but there so many others out there suffering of Crohn's disease or Ulcerative Colitis who are going through with that struggle, let’s try to help them!
Sign it here Petitioning Governor Cuomo to sign into law NY Ostomy Supplies Coverage Bill and send it to others to sign it as well.

Please help us clear the last hurdle, and many thanks for all your help so far; contact me if you have any questions.

Thursday, July 24, 2014

Petitioning Governor Cuomo to sign into law NY Ostomy Supplies Coverage Bill

As we informed you, the New York Ostomy Supplies Coverage Bill has passed in both the New York Senate and Assembly; all that is needed now is for Governor Cuomo to sign it into law.  

It would be a great help if you could communicate your support of the bill and to urge him to sign it into law.
Therefore we created an online petition asking the Governor to sign it.

Please sign it here Petitioning Governor Cuomo to sign into law NY Ostomy Supplies Coverage Bill and send it to others to sign.

Please help us clear the last hurdle, and thank you for your all your help so far; contact me if you have any questions.
Thanks again!

Thursday, July 17, 2014

JCCSG Event #6



Hi all,

We are currently in the planing stages of our next symposium,and we welcome your input and suggestions. 

We have had numerous requests to arrange a women's only educational event where many women's issues affected by Crohn's disease and Ulcerative Colitis can be freely discussed. We have been working during the past few weeks to make this happen and woulds appreciate your opinion and concerns regarding the topics to be addressed.  Also, we still have not decided on location; what do you say?

We're working hard to get this done; please help us out and send us an email or call us at 718-63-JCCSG (718-635-2274) with your advice and comments.

We thank you in advance!

We'll keep you posted as details are finalized

Tuesday, June 24, 2014

NY Ostomy Supplies Coverage Bill

Dear Member

We are delighted to inform you that the New York Ostomy Supplies Coverage Bill has now passed in both the New York Senate and Assembly; all that is needed now is for Governor Cuomo to sign it into law.  

It would be a great help if you could communicate your support of the bill and to urge him to sign it into law.

I should point out that there were some changes to the Bill Including the numbers for the Bill in both the Senate and the Assembly.

The easiest way to send the message is to email it to the following address:
legislative.secretary@exec.ny.gov

A long message is not necessary but it needs to include something along the following lines: 

Subject: NY Ostomy Supplies Bill S7893/A10140

Message: 
The Honorable Andrew M. Cuomo,
Governor of New York State

I am writing to ask that you sign into law Assembly bill A10140 and Senate bill S7893/A10140 that concern the provision of more extensive insurance coverage for people who have undergone ostomy surgery."

You may also contact the Governor's office by phone (518) 474-8390

Please help us clear the last hurdle, and thank you for your all your help so far; contact me if you have any questions.

Thanks again! 

Wednesday, April 30, 2014

New Webcast: "Advances in IBD: An Update for Patients“ by CCFA

Hello Everyone,

We know we’re late on this one… but still…. As always we try to provide as much information and education to our group members, therefore we are excited to inform you about an New Webcast: "Advances in IBD: An Update for Patients“ by our great friends at the CCFA (Crohns & Colitis Foundation of America).

 

Advances in IBD: An Update for Patients

TONIGHT - Wednesday, April 30, 2014
8:00-9:00 pm EST 
(5:00-6:00 pm PST)

Register NOW for this free educational event! 

CCFA's "Advances in IBD Clinical & Research Conference" is an annual medical education event for physicians, researchers, and other healthcare professionals. This special webcast is an overview, geared toward patients, of the most important clinical research discussions from the 2013 "Advances" conference.

Topics include the use of diagnostic tests, surgery for IBD, progress in the areas of genetics and the microbiome, as well as a look at the future of IBD care. Participants will hear from a leading expert in the field of IBD research, and have the opportunity to ask questions. Register to watch this webcast today!



Speaker:
Maria T. Abreu, MD, AGAF
University of Miami
Miller School of Medicine
Miami, Florida


Join the conversation about this program via Twitter! #AdvancesinIBD

Tuesday, April 8, 2014

Pesach Notifications


Hi all,

As the Yom Tov Pesach is around the corner, we would like to remind you again, You should exercise extreme caution and consult with your doctor and Rabbi/Rav before making a decision not to take a medication on Pesach. As important as one treats the laws of Kashrus, one is also obligated to treat the Mitzva of "V'Nishmartem M'Od L'Nafshotaichem" - "Take care of your health". Therefore, under mo circumstances should an individual forego taking a prescribed medication of Pesach (and during the year...) without first consulting one's physician and Rav for a careful analysis of the situation. Remember! We are eating Matzoh's... Don't take a chance and please be responsible!

And for the 'Arba Kosos' remember, if you are taking Flagyl - Metronidazol you are not allowed to drink any alcohol! and same goes to a lot of other antibiotics.
All other IBD patients should please double check with your doctor if the effectiveness of your medication will not be decreased or render them useless while mixing them with alcohol.

Please forward this email to all patients and their families you know.

We would like to wish you a Chag Kosher V'Samayach! A happy and healthy Yom Tov!

Wednesday, March 12, 2014

Purim Alert!

Hi all,

We're posting this alert early enough... it's a friendly reminder about the danger of mixing certain medications with alcohol. In some cases, alcohol interactions may decrease the effectiveness of medications or render them useless. in other cases, alcohol interactions may make drugs harmful or even toxic to your body. even in small amounts!

We witnessed many patients taking Flagyl - Metronidazel and they drank alcohol having very unpleasant and some even life threatening side effects, Therefore if you're taking Flagyl - Metronidazel, do NOT drink! (we pointed out one Antibiotic, but there are many more other medications with the same danger).

In any case, each and every Crohn's and Colitis patient should double check with their doctor if drinking alcohol while taking your medication is safe, and if you're allowed to drink even a drop!

Please be responsible! do it for your self and your family.

A Freilichen Purim! and Tumid B'Simcha!


Tuesday, January 14, 2014

Mazel Tov! Dr. Rahmani

We would like to wish a hearty Mazel Tov to our dear friend 
Dr. Rabin Rahmani, M.D.
Director of Medical Education and Research Department of Gastroenterology of Maimonides Medical Center, And Physician at Brooklyn Gastroenterology and Endoscopy Associates, 
Upon the birth of a Baby Girl.


Dr. Rahmani, a speaker at our past symposium is a strong advocate for our patients and a source of advice and guidance for JCCSG members.

​We wish him much Nachas from this child and from his family along with health, wealth and abundant happiness. May he 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 always.

In the name of the entire Board and all our members,

Yoely Drummer
Founder & Executive Director 

Monday, January 13, 2014

IBD Research Funding at Stake: Take Action Now

IBD Research Funding at Stake: Take Action Now

This week, the House of Representatives and the Senate will work to pass funding bills for the entire government for fiscal year 2014. Currently, Congress is considering providing funding for IBD research at the Department of Defense’s Peer-Reviewed Medical Research Program (PRMRP)
 The Peer-Reviewed Medical Research Program actively:
  • Provides expanded research at the Department of Defense
  • Highlights the impact of IBD on service members

This research, if funded, will work to find new biomarkers for IBD.

Contact your legislator today and ask them to include IBD in the Peer-Reviewed Medical Research Program.

Wednesday, January 1, 2014

Mazel Tov Rabbi Follman

We would like to wish a hearty Mazel Tov to our dear friend 
Rabbi Eluzer Duvid Follman 
JCCSG Board Member

Upon the wedding of his daughter. as we all know Rabbi Follman is someone who has put his heart and soul into assisting Crohn's and Colitis sufferers for many years, and so skillfully conducted our evenings with much tact.

The Wedding is tonight at The Palace, 780 McDonald Ave. Brooklyn NY 11229.

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 live for people affected by Crohn's and Colitis and for their families with success and Brucha at all times.

Wishing you in the name of the entire Board and all our members

Yoely Drummer
Founder & Executive Director