Welcome to the Maryland / Southern Delaware Chapter.  We have many new and exciting things happening in our chapter, and we want you to be a part of it all.

In keeping with the mission of the organization, our chapter provides the best in educational offerings. It supports both local and national research projects through its fundraising efforts, and offers support to our patient and caregiver population. This year we have expanded the educational programming to three regional areas for the lay population and one major professional program for medical personnel. These educational efforts are being presented in the areas throughout the chapter's jurisdiction for the first time.  This will enable our constituents from all locations to take part.

Our national and international research efforts are making great headway in finding a cure for both Crohn's Disease and Ulcerative Colitis, but, all of these research efforts are extremely costly and require the help of our members to assure continued progress.

Last year, our "Take Steps Walk" nationally raised over six million dollars to guarantee that the state-of-the-art research continues to narrow the gap between the diseases and the cure.  You can help to advance that research success by joining one or both of your local chapter's Take Steps fundraisers being held at Sunset Park and the Boardwalk in Ocean City, MD on Saturday, May 1, 2010 or at Federal Hill Park, (overlooking the harbor), Baltimore, MD on Saturday, June 5, 2010.

These two walks are slated to raise in excess of one quarter of a million dollars.  Won't you help the cause by joining us?  Details on how you can help are listed below.  Until a cure is found, please know that we are here to provide you with support group involvement, research highlights and results.

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   The Crohn's & Colitis Foundation of America Maryland/ South Delaware Chapter invites you to join us for:
Understanding Inflammatory Bowel Diseases:
What Every Patient Needs to Know

 Date: Tuesday, December 1, 2009
 Time:  6:30 PM Registration 7 PM Program
 Place:  University of Maryland Medical Center
                   Shock Trauma Auditorium
                  22S. Greene Street
                  Baltimore, MD 21201
Speaker:  Dr. Raymond Cross
Register: http://online.ccfa.org/site/Calendar?view=Detail&id=104181

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Program topics include:
• Overview of inflammatory bowel diseases
• Review of current therapies and emerging research
• Management of disease and treatment-related side effects
• Question-and-answer session
For more information, contact:
Maryland@ccfa.org  or (800) 618-5583

Supported by an educational grant from:

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The Crohn's & Colitis Foundation of America's Maryland/Southern Delaware Chapter is proud to announce that the Team Challenge half marathon endurance training fundraising program is now available locally in the Baltimore-Annapolis area! We are now beginning recruitment for our winter season for the Las Vegas Rock n' Roll Half Marathon. If you are interested in training locally for the Baltimore team, contact Jillian Griffin: email: jgriffin@ccfa.org  phone: (646) 641-1427.

Viva Las Vegas!

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SAVE THE DATE!

 

A co-ed residential camp for kids with Crohn's disease and Ulcerative Colitis

Our 2010 session will be held at Camp Nock-A-Mixon
located in Kintnersville, Bucks County, PA

Applications will be available in January 2010 for campers (ages 9 -16), Leaders in Training (ages 17) and volunteers (19+)  (Space is Limited)

Click here to learn more about this exciting program, or contact Bob Milanchus, Executive Director at rmilanchus@ccfa.org or 443-276-0861

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The chapter would like to offer it's heartfelt thanks and appreciation to the following pharmaceutical companies, who have graciously contributed to making our education programs possible.

  

       

     

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CCFA Community • Giving You the Tools to Cope

Whether you're a newly diagnosed Crohn's or ulcerative colitis patient, or a friend or family member of someone with one of these diseases, join the thousands of others online at our online community and get the support you need. 

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Patient Support Program

Power of Two

The Power of Two program provides one-to-one support and compassion to patients and their families suffering from Crohn's disease and ulcerative colitis.  Individuals participating in the program are matched to volunteers who have had similar challenges and experiences for phone or email conversations.

This program is open to adults with IBD as well as parents of children with IBD.  We are working to expand this program to serve spouses of people with IBD and teens.

If you are seeking support, or if you are interested in volunteering to share your experiences with others, please contact Robert Milanchus at 443-276-0861 or at rmilanchus@ccfa.org

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Clinical Trials

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Protocol Number: 09-I-0175
 
Active Accrual, Protocols Recruiting New Patients

Title:  NIH Substudy for a Multicenter, Randomized, Double-Blind, Placebo-Controlled, Parallel-Group Proof-of-Concept Study to Assess the Efficacy, Safety, and Tolerability of Two Single IV Infusions of AIN457 10 mg/kg (Anti IL-17 Monoclonal Antibody) in Patients with Moderate to Severe Active Crohn's Disease

Purpose:  Crohn's disease is an inflammatory bowel disease with major symptoms such as diarrhea and abdominal pain when the disease is in an active stage. AIN457 is a drug developed by NOVARTIS that is used to stop the action of Interleukin-17 (IL-17), a protein made by the body that contributes to many different kinds of inflammatory diseases, including Crohn's disease. AIN457 has not yet been approved by the Food and Drug Administration and is being developed for the potential treatment of various inflammatory diseases like rheumatoid arthritis and psoriasis, as well as Crohn's disease.

Objectives:  The main objective of the multicenter study (sponsored by NOVARTIS) is to determine whether AIN457 is safe and effective in the treatment of Crohn's disease, and if effective, how long the effect will remain.  The main objective of the NIH sub-study is to obtain additional blood and gut biopsy tissue for monitoring biochemical changes in immune variables in response to study drug or placebo.

Eligibility:  Important eligibility criteria to consider for patients to be enrolled in the AIN457 trial include:

Inclusion criteria:

• Male or female; 18-75 years old
• Diagnosis of Crohn's disease for at least 3 months prior to screening
• Moderate to severe active Crohn's disease at baseline, defined as:  CDAI ≥220 and ≤450
• Active disease despite prior treatment with stable dose of corticosteroids for 2 weeks, or immunosuppressant for at least 3 months (e.g. methotrexate, azathioprine).

Exclusion criteria:

• Subjects with symptoms associated with active bowel stricturing disease and pre-stenotic dilation on radiography. 
• Fistulizing disease if complicated by sepsis and/or untreated abscess.
• Subjects with multiple bowel surgeries and clinically important short bowel syndrome defined as an inability to maintain caloric intake. 
• Prior therapy with rituximab. 
• Receiving corticosteroids dose equivalent to a >40mg dose of prednisone per day.
• Subjects demonstrating clinical improvement due to other Crohn's therapy.
• Subjects with active or history of clinically significant cardiac abnormalities.

Design:  The multicenter study plans to enroll seventy-two (72) subjects with moderate to severe active Crohn's disease that is not controlled by corticosteroids, immunosuppressant (e.g. methotrexate or purine metabolites) or anti-inflammatory treatment (e.g. 5-ASA). At baseline visit, if the eligibility of the subject is confirmed, the subject will be randomized (2:1 ratio) to receive either AIN457 or placebo administered as a 2 hours intravenous infusion. A total of 2 infusions will be given on day 1 and day 22 respectively. After infusions there will be a follow-up period of up to 18 weeks.
For the NIH sub-study, additional blood will be drawn and a colonoscopy will be performed before the first infusion and after the second infusion.

Once this study is completed, an extension study will be conducted that will offer access to AIN457. Patients who complete the current study may be eligible to enter the extension study and receive therapy with AIN457.

Participating Site Contact Information:
National Institutes of Health (NIH)
National Institute of Allergy and Infectious Diseases (NIAID)
Michael Yao, MD, NIH Principal Investigator • Tyra Estwick, RN, BSN, NIH Research Nurse

Building: 10 CRC, Room 6-3742                 Building 10 CRC, Room 5-3750
  Telephone: 301-594-0593                             Telephone: 301-496-3429

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The Home Telemanagement Trial (UC HAT)
for Patients with Ulcerative Colitis

The purpose of the study is to determine if a home telemanagement system for patients with ulcerative colitis (UC HAT) improves clinical outcomes compared to routine care.  A computer program will assign interested patients by chance to either the UC HAT or the routine care group.

Patients in the UC HAT group will be asked to complete self-testing each week at home using the system.

All patients will undergo research visits every 4 months for one year. Patients will complete a series of questionnaires at each visit that measure the patients disease activity, quality of life, IBD knowledge, medical compliance, and other parameters.  Emergency room visits and hospitalizations will also be measured.  A blood draw is required at each study visit.

If UC HAT is effective, the system could be used in the IBD community to improve clinical care or be used in patients with limited access to health care.

Get More Information - or call Nadia Cheevers at 410-706-3398

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Test - Treat Strategy to Prevent Ulcerative Colitis
Relapse Dose Escalation and Remission (DEAR) Study

The proposed study will test whether incresing Lialda dose can reduce fecal calprotectin (FCP) levels, a marker of intestinal inflammation that is highly predictive of the risk of relapse among patients wiht inactive ulcerative colitis.  Sixty patients with FCP levels <50mcg/gm stool will be observed for 48 weeks.  All patients will have FCP concentration measured using a commercially available assay at enrollment, 6 weeks and 12 weeks.  All patients with persistently elevated FCP will receive one or both of the following interventions: change in the mesalamine formulation to Lialda and/or increase in the dose of Lialda.  Reduction in FCP levels below 50mcg/gm stool 6 weeks after randomization will be the primary outcome.  The percentage of patients achieving this outcome will then be compared between groups.  All randomized patients (as well as those who were excluded from the trial because of a low FCP concentration at baseline) will be followed to week 48 to determine the rate of clinical relapse.

Get Further Information or call Lee Ann Pazulski at 410-706-4310

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A 5-Year, Registry Study of Humira (Adalimumab)
in Patients with Moderately to Severely Active
Crohn's Disease (CD)

The proposed study will evaluate the safety of Humira (Adalimumab)
in patients with moderately to severely active CD already receiving
Humira as part of their medical treatment.  Investigators will collect
safety data over time in patients treated with Humira. 
This will assist in the clarification of the
short and long-term safety profile of the medication.
For more information, contact Lee Ann Pazulski at 410-706-4310

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Oral and Rectal Budesonide for the Treatment of Extensive Ulcerative Colitis:  A Pilot Study

The purpose of this study is to evaluate whether the combination of oral and rectal budesonide is effective in the treatment of patients with moderately active ulcerative colitis (UC).  In addition, the study will evaluate whether the combination of oral and rectal budesonide is better tolerated than conventional steroids.  Tweny patients will be recruited in this open study.  All eligible patients will receive a combination of oral budesonide and rectal budesonide for eight weeks.  Both forms of budesonide will be tapered according to the investigators preference after week 8. Clinical visits will take place at bseline and 8 weeks.  In addition, telephone follow up will take place at weeks 2, 4, 6, 10, 12, 26, and 52.  Assessment of efficacy and safety will take place at the follow up clinic visit and at each telephone follow up.

For more information, see trials.gov or call Nadia Cheevers at 410-706-3398

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Challenge Yourself to Change a Life!

Team challenge is the Crohn's & Colitis Foundation's
new endurance training program.  This exciting
new fundraising program trains you to run or
walk a half marathon while helping the Foundation
raise funds to find a cure for ulcerative colitis
and Crohn's Disease. 

  Get More Information  to find a Team in your Area.

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For a list of doctors who have supported this chapter
please see More Information below

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	December 1, 2009 The Crohn's & Colitis Foundation of America Maryland/ South Delaware Chapter invites you to join us for: Understanding Inflammatory Bowel Diseases: What Every Patient Needs to Know 6:30 PM Registration 7 PM Program University of Maryland Medical Center Shock Trauma Auditorium 22S. Greene Street Baltimore, MD 21201 Speaker: Dr. Raymond Cross Register: http://online.ccfa.org/site/Calendar?view=Detail&id=104181  Program topics include: • Overview of inflammatory bowel diseases • Review of current therapies and emerging research • Management of disease and treatment-related side effects • Question-and-answer session For more information, contact: Maryland@ccfa.org or (800) 618-5583 Supported by an educational grant from:

Please note: All support group listings are subject to change. Please call the individual support group number or email listed below or call the chapter number above to confirm the meeting date, time, and place.

ACTIVE SUPPORT GROUPS

ANNE ARUNDEL COUNTY
Annapolis Support Group
Facilitator: Varda Amir-Orrel
1st Wednesday (monthly) 7 p.m.
Sajak Pavilion (2nd Floor)
next to Anne Arundel Medical Center
2002 Medical Parkway
Annapolis, MD. 21401

We laugh, cry, vent and rant about our experiences
with IBD (Inflammatory Bowel Diseases)
We have facilitators who have lived with IBD for
over 20 years!   All ages, (including children)
are welcome to attend.  For more information please
contact Varda at (410) 212-7755 or via email
sam.i.colon@gmail.com

BALTIMORE CITY

The Herbert & Walter Samuelson Children's Hospital at Sinai
New Adolescent Support Group for children ages 10 -15 and their Parents
Facilitator: Michelle Fink
Meets the 3rd Thursday of each month - 6:30p to 8:30p
** Holidays may cause rescheduling - please contact Michelle directly to confirm**
Herbert & Walter Samuelson Children's Hospital at Sinai
2401 W. Bevedere Avenue
Baltimore, MD 21215

Kids:  This is your chance to share stories in confidence, make new friends, participate in kid friendly activities!
Parents:  This is your opportunity to meet and exchange ideas with other parents of kids with IBD!

For further information or questions please contact Michelle Fink at 410-375-2516


University of Maryland Medical Center
Facilitator: Laura Stephens
Meets on the 1st Thursday, Every Other Month,
From: 6:30p to 7:30p
22 S. Greene Street
Patient Resource Center
1st Floor
Baltimore, MD

The 1st meeting of 2009 will be held on January 8th, (the 1st is New Years Day)
Featuring a presentation by Dr. Raymond Cross.  Please RSVP to
Laura Stephens: lauras@verizon.net

BALTIMORE COUNTY
Towson Support Group
Facilitators: Lori Gunning, RN and Nancy Dabkowski, RN
Saint Joseph Medical Center
7601 Osler Drive
Towson, MD 21204

This group is for Adult patients with Crohn's Disease and
ulcerative colitis.  Friends and Family are welcome to attend.
The group meets Four times a year.  Please call Community
Outreach at 410- 337-1479 for more information.

Pikesville Support Group
Facilitator: Irene Blizzard
Location: Woodholme Gastroenterology
                 1838 Greentree Road, 
                 Suite #400
                 Pikesville, MD 21208

Meetings will begin in September and meet every other month
from 7:00 pm to 8:30 pm

For exact dates, questions or additional information, please contact
Irene Blizzard at ireneblizzard@msn.com

HARFORD COUNTY
Bel Air Support Group
Facilitator: Denise Holcomb
Meetings will begin in April 2008
No meetings during the summer months June - August
Meetings will resume again on September 2nd.
Christ Our King Presbyterian Church
10 Lexington Road
Bel Air, MD 21014
(410) 838-4698

Come to share in the joy, pain, guts and glory of living with IBD!
We meet from 7:30 p.m. to 9:00 p.m. in the Library on the 1st
Tuesday of the month from September - May.  No Summer Meetings,
Patients with Crohn's and Ulcerative Colitis, Friends
and Family are welcome to attend.

HOWARD COUNTY
Columbia Support Group
Facilitator: James Thomas
Phone: (410) 750-7468
4th Tuesday monthly at 7 p.m.
(no meeting in December or January)
Wellness Center L-9
Columbia Medical Center
11055 Little Patuxent Parkway
Columbia, MD

WASHINGTON COUNTY
Hagerstown Support Group
Facilitator: Susan Wilson-Long & John Long
Phone: (717) 762-0099
3rd Thursday of each month at 7:00 p.m.
Washington County Free Library
(2nd Floor Mezzanine, Elevator Available)
100 S. Potomac Street
Hagerstown, MD

For exact dates, questions or additional information please call the above number or email Susan or John at: ibdsupportgroup@gmail.com 

 

SUPPORT GROUPS ON HOLD:

CARROLL COUNTY
Westminster Support Group
On Hold

GREATER BALTIMORE MEDICAL CENTER (GBMC)
On Hold

ABINGDON ADOLESCENT SUPPORT GROUP
On Hold

FREDERICK COUNTY
On Hold

EASTERN SHORE
On Hold

ST. MARY COUNTY GROUP
On Hold

If you are interested in becoming a Support Group Facilitator
for any of the groups listed above, or if you would like to
start your own, please contact our office at 443.276.0861
or toll free 800.618.5583.

CHAPTER BOARD OF TRUSTEES Mary Glagola - President Mark Brodsky - President Elect Hank Campfield - Vice President Patrick Shurney - Treasurer Christine Lothen-Kline - Secretary Raymond Cross, MD - CMAC Chair BOARD MEMBERS Varda Amir-Orrel Roy Cubbler Denise Dory Jarrett Leeb Jon Martineau Michael Murphy Donna O'Neill Jerry Roschwalb Cynthia Rosenwald Tricia Wilson YOUTH ON BOARD Allie Rize CHAPTER MEDICAL ADVISORY COMMITTEE
Theodore Bayless, M.D. Meyerhoff Digestive Disease Center JHH Blalock 4th Floor 600 North Wolfe Street Baltimore, MD 21287 410-955-4916	Marshall Bedine, M.D. 10751 Falls Road, #301 Lutherville, MD 410-583-2633
Steven Brant, M.D. (researcher IBD) 1503 East Jefferson Street Baltimore, MD 21231 410-614-0637	Jerrold Canakis, M.D. 124 N. Main Street Berlin, MD 21811 410-641-2938
Andrew Rosenstein, M.D. 7505 Osler Drive Suite #307 Towson, MD 21204 410-296-4210	Raymond Cross, M.D. University of Maryland, IBD Program 22 S. Greene Street Suite N3W62 Baltimore, MD 21201 410-328-7244
Carmen Cuffari, M.D. (pediatric) Johns Hopkins Hospital Division of Nutrition, Brady 320 600 Wolfe Street Baltore, MD 21287 410-955-8765	Edward Wolf, M.D. Woodholme Gastroenterology and the Endocenters of Baltimore and Quarterfield Station 1838 Greene Tree Road, Suite 400 Baltimore, MD 21208 410-602-7782
Mark Diamond, M.D. 9105 Franklin Square Drive Suite #308 Baltimore, MD 21237 410-574-5877	Mark Flasar, M.D. University of Maryland, IBD Program 22 S. Greene Street, Suite #N3W62 Baltimore, MD 21201 410-328-5780
Neil Goldberg, M.D. 7505 Osler Drive Suite #307 Towson, MD 21204 410-296-4210	Mary Harris, M.D. Johns Hopkins Hospital Blalock 465 600 Wolfe Street Baltimore, MD 21287 410-955-4081
Maria Oliva-Hemker, M.D. (pediatric) Johns Hopkins Hospital Pediatric GI, Grady 320 600 Wolfe Street Baltimore, MD 21287 410-614-2114	Howard Kader, M.D.(pediatric) Pediatric Gastroenterology Sinai Hospital Medical Office Building, Suite #407 2411 West Belvedere Ave. Baltimore, MD 21229 410-601-8663
Amin Khan, M.D. 7505 Osler Drive Suite #307 Towson, MD 21204 410-296-4210	Stephen Kavic (surgeon) Maryland University Hospital 22 S. Greene Street Suite N3W62 Baltimore, MD 21201 410-328-6187
Gerald Mullin, M.D. Johns Hopkins Hosptial 600 N. Wolfe Street Carnegie 464-B Baltimore, MD 21287 410-955-4910	Kalpana Murthy, M.D. Pediatric Gastroenterology Sinai Hospital 2411 West Belvedere Ave, Suite #209 Baltimore, MD 21215 410-601-8663
Adrian Park, M.D(G.I.surgeon). University of Maryland Medical Center 22 S. Greene Street, RM S4B14 Baltimore, MD 21201 410-328-7994	Natarajan Ravendrhan, M.D. Digestive Diseases Associates 4660 Wilkens Ave, Suite #206 Baltimore, MD  21229 410-737-8490
	David Tuchman, M.D. (pediatric) Pediatric Gastroenterology Sinai Hospital 2411 West Belvedere Ave, Suite#407 Baltimore, MD 21215 410-601-8663

 

 

Maryland/S. Delaware Chapter

10400 Little Patuxent Parkway
Suite 270
Columbia, MD 21044

Phone: (443) 276-0861
Fax: (443) 276-0865
Toll Free: (800) 618-5583

Robert J. Milanchus - Executive Director rmilanchus@ccfa.org