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CCFA Maryland South Delaware Chapter

Maryland / S. Delaware Chapter of CCFA

Address:
10400 Little Patuxent Parkway
Suite 270
Columbia, MD 21044

Phone, Fax, E-mail:
Phone:  (443) 276-0861
Fax: (443) 276-0865
Toll Free:  (800) 618-5583 
E-Mail:maryland@ccfa.org

Alternate: acoffey@ccfa.org

 


SPECIAL HIGHLIGHTS

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 "Team Challenge" raised over 3.5 million dollars and "Take Steps Walks" raised over six million dollars nationally 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 and participating in our local chapter's Team Challenge Race in  Las Vegas on December 5, 2010 This first-rate event starts and finishes on the famed Las Vegas Strip, and takes you past world-famous attractions while running or walking on this flat, fast course. You can also register for and participate in one or both of your local chapter's Take Steps fundraisers being held at Sunset Park and the Boardwalk in Ocean City, MD or at Federal Hill Park, (overlooking the harbor and walking at the inner harbor), Baltimore, MD.

    Won't you help the cause by joining us?  For more information on Team Challenge, please contact Jillian Griffin and for more information on Take Steps, contact Allison Coffey.  Until a cure is found, please know that we are here to provide you with support group involvement, research highlights and results.


Team Challenge Maryland South Delaware

Join Team Challenge in Vegas!

Rock the Strip & Find a Cure! Training begins in August.

Click Here to Sign Up for an Information Meeting Today

INFORMATION MEETINGS DATES & LOCATIONS:

Saturday August 14th
10:00 am
West Co. Library Odenton
1325 Annapolis Rd.
Odenton, MD 21113

Tuesday August 17th
7:00 pm
White Marsh Library
8133 Sandpiper Circle
Nottingham, MD 21236

Wednesday August 18th
6:00 pm
MaGerk's Pub Federal Hill
1061 S. Charles St.
Baltimore, MD 21230

Tuesday August 24th
7:00 pm
Pikesville Library
1301 Reisterstown Rd.
Pikesville, MD 21208

Thursday August 26th
6:00 pm
Hickory Ridge Community Center (Howard Co.)
6175 Sunny Spring
Columbia, MD 21044

For more information on Team Challenge, please email Jillian Griffin


 

   We are excited to announce CCFA's new Team Challenge Cycle Training Program, hosted by Centurion Cycling, this 1 day 50 mile race will take place in the beautiful mountains of  Ontario Canada.  By entering the biking/cycling market, we hope to raise even more awareness  and funds for IBD research by offering a new and different way to get involved with Team Challenge.  For this pilot event, there will be one National Team training and fundraising virtually. Participants will receive weekly coaching calls, tips and a 14 week training schedule to reach their personal best. For more information please visit the Team Challenge Cycle website.


Department of Defense Peer Reviewed Medical Research Program
Funding Opportunities for Fiscal Year 2010

The Fiscal Year 2010 (FY10) Defense Appropriations Act provides $50 million to the Department of Defense Peer Reviewed Medical Research Program (PRMRP).

   The vision of the PRMRP is to identify and fund the best medical research to protect and support warfighters, veterans, and all beneficiaries and to eradicate diseases that impact these populations. The PRMRP challenges the scientific and clinical communities to address one of the FY10 congressionally directed topic areas with original ideas that foster new directions in basic science and translational research; novel product development leading to improved therapeutic or diagnostic tools, or improvements in clinical policies/guidelines; or clinical trials that address an immediate clinical need. This program is administered by the U.S. Army Medical Research and Materiel Command through the Office of the Congressionally Directed Medical Research Programs (CDMRP).  Further information available here.

Shop and Give

Food Lion Shop & Share Program

        CCFA has registered select east coast chapters to the Food Lion Shop & Share Program. Every time you make a purchase by using your MVP card, Food Lion will make a donation to the local CCFA chapter. To register for a MVP card with the Food Lion Shop & Share Program, or call 1-800-210-9569. Be sure to choose the Crohn's & Colitis Foundation of America for your local chapter. Chapters registered in the Food Lion Shop & Share Program are Greater Washington DC/Virginia, Philadelphia/Delaware, Carolinas, Georgia/ Tennessee, Western Pennsylvania/West Virginia, Maryland/South Delaware, Florida, and Kentucky

Your Dollars At Work


 

Camp Oasis Logo

SAVE THE DATE!

 Camp Oasis Kids

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 are available for campers (rising 4th-11th), Leaders in Training (rising 12th), ) and volunteers (19+)  (Space is Limited and registration closes June 1, 2010)

Click here to learn more about this exciting program, or contact Janet Domolky, Camp Contact at
1-877-807-5271


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.

centocor

Elan   Osiris Therapeutics, Inc.

 Proctor and Gamble Pharmaceuticals Salix Pharmaceuticals     

Shire      Sigma-Tau


Join CCFACommunity.org

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. 


Power of Two

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.


Young People

Clinical Trials


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  301-594-0593                              Telephone:  301-496-3429  301-496-3429


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  410-706-3398


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  410-706-4310


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  410-706-4310


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  410-706-3398


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


   
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CALENDAR/EVENTS
August 14, 2010

TEAM CHALLENGE INFORMATION MEETING

10:00 am

West Co. Library Odenton

1325 Annapolis Rd. Odenton, MD 21113

August 17, 2010

TEAM CHALLENGE INFORMATION MEETING


7:00 pm

White Marsh Library

8133 Sandpiper Circle

Nottingham, MD 21236

August 18, 2010

TEAM CHALLENGE INFORMATION MEETING

6:00 pm

MaGerk's Pub Federal Hill

1061 S. Charles St.

Baltimore, MD 21230

August 24, 2010

TEAM CHALLENGE INFORMATION MEETING


7:00 pm


Pikesville Library

1301 Reisterstown Rd.

Pikesville, MD 21208

August 26, 2010

TEAM CHALLENGE INFORMATION MEETING

6:00 pm

Hickory Ridge Community Center (Howard Co.)

6175 Sunny Spring

Columbia, MD 21044

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SUPPORT GROUPS

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
Location: Sajak Pavilion (2nd Floor), next to Anne Arundel Medical Center, 2002 Medical Parkway, Annapolis, MD. 21401

Meeting Time: 1st Wednesday (monthly) 7 p.m.

Meeting Info: 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
Meeting Time: Meets the 3rd Thursday of each month - 6:30p to 8:30p
** Holidays may cause rescheduling - please contact Michelle directly to confirm**
Location:
Herbert & Walter Samuelson Children's Hospital at Sinai, 2401 W. Bevedere Avenue, Baltimore, MD 21215

Meeting Info: 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
Meeting Time: Meets on the 1st Thursday, Every Other Month, From: 6:30 PM to 7:30 PM
Location: Patient Resource Center, 22 S. Greene Street, 1st Floor
Baltimore, MD

Meeting Info: 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
Location: Saint Joseph Medical Center, 7601 Osler Drive, Towson, MD 21204

Meeting Info: 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

Meeting Time: 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


HOWARD COUNTY

Columbia Support Group
Facilitator: Brad Thomas
Location: Medical Pavilion at Howard County General Hospital, 10710 Charter Drive, Suite 100, Columbia, MD  21044

Meeting Time: This group meets at 7:00 PM regularly on the fourth Tuesday every month of the year, with the exception of November and December, due to the holidays

For exact dates, questions or additional information, please contact
Brad Thomas at 
bradley.e.thomas@gmail.com


WASHINGTON COUNTY

Hagerstown Support Group
Facilitators: Susan Wilson-Long & John Long
Phone: (717) 762-0099
Meeting Time: 3rd Thursday of each month at 7:00 p.m.
Location: 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

HARTFORD COUNTY
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.


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MORE INFORMATION

 

CHAPTER BOARD OF TRUSTEES

Mary Glagola - President
Hank Campfield - Vice President
Patrick Shurney - Treasurer
Raymond Cross, MD - CMAC Chair

BOARD MEMBERS

William F. Herrfeldt
Roy Cubbler
Donna O'Neill
Allie Rize
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

 

 

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CONTACT INFO

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

Allison Coffey - Community Development Director

Caneka McNeil - Regional Education & Support Manager

Jillian Griffin - Endurance Manager

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