We are well into 2008, and that means more IBD Kids' Club activities! With many great events planned, this is shaping up to be our best year ever. Any child with IBD ages 8 to 18 can be a member, and we are always on the lookout for new activity ideas. Call Stacey at: 781-449-0324 ext. 13 today to be a part of the IBD Kids' Club!
Check back here for future event announcements.
The Crohn's & Colitis Foundation invites you to take the Team Challenge on July 20, 2008 at the Napa to Sonoma Wine Country Half Marathon. We'll help you train to run or walk the race as you raise funds to find a cure for Crohn's disease and ulcerative colitis.
For more information, contact Marisa Sarringhaus at 781-449-0324x12 or msarringhaus@ccfa.org
For more information, and to register for a Take Steps Walk near you, please visit http://www.cctakesteps.org/. For local site information, please contact Development Manager Elizabeth Aggott (eaggott@ccfa.org).
May 14, 2008
Physician and Healthcare Professional Dinner Lecture
"Current Concepts of IBD Pathogenesis: A Blueprint for Future Treatment"
Please join us for our annual physician and healthcare professional educational dinner program.
Speaker: Dan Podolsky, M.D.; Chief, Gastroenterology Unit, Massachusetts General Hospital
Take Steps for Crohn's & Colitis in Boston Kick-Off Event at Jillian's!
Please join us on Monday, May 19, 2008 as we kick-off the Take Steps for Crohn's & Colitis walk campaign in Massachusetts at Jillian's Boston!
Gather your friends, family and teammates for this fun event and help us to kick-off the final weeks of our fundraising for the walk with food, fun & friends at Jillian's Boston.
Monday, May 19, 2008 6 - 8 PM Jillian's Boston 145 Ipswitch Street Boston, MA 02215 (driving directions)
Admission for this event is free, however we are asking that all attendees register for the June 14 Take Steps walk in Boston, MA at the Boston Common.
For more information and to register, please call or email Elizabeth Aggott, CCFA Development Manager, at 800.314-3459 Ext. 10 or eaggott@ccfa.org.
** Please note that registration for this event is mandatory and tickets to attend are given out on a first-come, first-serve basis. **
May 21, 2008
Take Steps for Crohn's & Colitis in Vermont Kick-Off Event at Yankee Lanes!
Please join us on Wednesday, May 21, 2008 as we kick-off the Take Steps for Crohn's & Colitis walk campaign in Vermont at Yankee Lanes!
Gather your friends, family and teammates for this fun event and help us to kick-off the final weeks of our fundraising for the walk with food, fun & friends at Yankee Lanes in Colchester, VT.
Admission for this event is free, however we are asking that all attendees register for the June 21 Take Steps walk in Colchester, VT at St. Michael's College.
For more information and to register, please call or email Elizabeth Aggott, CCFA Development Manager, at 800.314.3459 Ext. 10 or eaggott@ccfa.org.
** Please note that registration for this event is mandatory and tickets to attend are given out on a first-come, first-serve basis. **
June 7, 2008
Dartmouth-Hitchcock Patient & Family IBD Symposium
This all-day educational program features lectures on Inflammatory Bowel Disease geared toward Crohn's disease and ulcerative colitis patients and their families.
Lecture topics include: Dealing with Insurance Coverage; Choosing the Right Medications for You; Looking Towards the Future; IBD Can't Stop Me! - A Patient's Perspective; and more.
Contact: Stacey Snyder, Education and Support Manager at 781-449-0324 ext. 13 or email ssnyder@ccfa.org for further program information.
Join the New England Chapter for Team Challenge! Train to run or walk the Napa to Sonoma Wine Country Half Marathon on July 20, 2008 in beautiful northern California. Money raised will fund research for Crohn's disease and ulcerative colitis.
For more information, contact Marisa Sarringhaus at 781-449-0324 x12 or msarringhaus@ccfa.org.
Camp Oasis is a co-ed residential camp program designed to enrich the lives of children with Crohn's disease and ulcerative colitis by providing a safe and supportive camp community.
Dates: Tuesday, August 19, 2008 through Sunday, August 24, 2008
The Power of Two - connecting people facing challenges brought on by living with Crohn's disease and ulcerative colitis. Individuals will be matched with others in the New England area who have experienced similar medical and personal concerns for the purpose of one-on-one phone conversations or e-mail support. Whether you are seeking support or are willing to help others by sharing your own experiences, please contact Barbara Tabak, Program Coordinator at btabak@charter.net or call Stacey Snyder, New England Education Manager at (800) 314-3459 ext. 13.
This program is open to adults with IBD and those with children, family members or other loved ones with IBD. Families will also be matched by way of the parents.
**If you are a first-time support group attendee, please contact Stacey at 781-449-0324 x13 before attending**
2008 Support Group Meeting Dates
Please note: We always are seeking individuals with a desire to become Support Group Leaders or co-leaders. If you, or someone you know, is interested in this opportunity, please feel free to call our office at 1-800-314-3459 or 781-449-0324, Ext. 13. All support group listings are subject to change. Please call the chapter number above to confirm the meeting date, time, and place.
*All attendees of CCFA support groups are strongly encouraged to become members of the organization. If you have any questions regarding this policy, please contact Stacey Snyder at: 781-449-0324 ext. 13.
MASSACHUSETTS
Berkshire Location: Berkshire Medical Center, Dining Room A, 725 North Street, Pittsfield, MA Leader: Faith Newmark Phone: (413) 442-2276 Email: FNewmark@Berkshire.RR.com Co-leader: Donna Volpi Phone: (518) 733-0278 Email: donnavolpi@hotmail.com Time: 5:30 p.m. Dates: MONDAY EVENINGS
Boston Children's Hospital Boston Parent & Family IBD Support Group Location: Children's Hospital Boston, 300 Longwood Avenue, Boston, MA Leader: Kate Donovan Phone: 617-335-6416 Email: kate.donovan@childrens.harvard.edu **Please check back for meeting updates**
Boston Location: Massachusetts General Hospital Bartlett Hall Building, 3rd Floor, Burr 3, Boston, MA Leader: Len Karasik Phone: 781-820-4311 Email: lenkarasik@yahoo.com Time: 6:30 p.m. – 7:30 p.m. Dates: 3rd TUESDAY EVENING OF EACH MONTH
Boston IAR (Ileoanal Reservoir) Support Group Location: Boston Medical Center; Newton Pavilion; 88 East Newton St., Conference Room C/D Leader: Linda Alexander, MSN, CWOCN Phone: (617) 638-5752 Email: Linda.alexander@bmc.org Co-leader: Murray Corliss, BSN, CWOCN Phone: (617) 414-5541 Email: Murray.corliss@bmc.org Co-leader: Siobhan Nevin, BSN, CWOCN Time: 10:00 a.m. – 12:00 p.m. Dates: SATURDAYS EVERY OTHER MONTH
Burlington J-pouch support Location: Lahey Clinic, 41 Mall Road, Burlington, MA Leader: Kerry Casey, RN, CETN Email: Kerry.M.Casey@lahey.org Co-leader: Donna Loehner, RN, CETN Phone: 978-750-4225 Email: Donna.l.Loehner@lahey.org Dates: WEDNESDAY EVENINGS: June 11, 2008; September 10, 2008; December 10, 2008.
Burlington Ostomy Association of Boston (OAB) Meetings Location: 1st Floor Training Room, 31 Mall Road, Burlington, MA (driving directions) Leader: Kerry Casey, RN, CETN Email: Kerry.M.Casey@lahey.org Co-leader: Donna Loehner, RN, CETN Time: 7:00 p.m. – 9:00 p.m. Dates: WEDNESDAY EVENINGS EVERY OTHER MONTH: June 4, 2008; August 6, 2008; October 1, 2008; December 3, 2008.
Fall River Location: Charlton Memorial Hospital, Physicians' Conference Room, 363 Highland Avenue, Fall River, MA Leader: Chris Ward, RN Phone: (508) 679-6611 Time: 7:00 p.m. – 8:00 p.m. Dates: MONDAY EVENINGS: April 14, 2008; June 2, 2008
Martha's Vineyard Location: Contact leaders for location of each meeting - call for details. Leader: Kathy Chaves Phone: (508) 693-5164 Email: Chavesvnyd@aol.com Co-leader: Jen Combra Phone: (508) 696-0045 Time: 7:00 p.m. Dates: 3rd TUESDAY OF EACH MONTH
Methuen Location: Holy Family Hospital, 1st Floor Boardroom, 70 East Street, Methuen, MA Leader: Judith Tompson Time: 7:00 – 9:00 p.m. Dates: 3rd WEDNESDAY OF EACH MONTH
**For more information regarding this group, please contact Stacey Snyder, CCFA Education Manager at: 781-449-0324 ext. 13 or via email at: ssnyder@ccfa.org.**
Westfield Location: Noble Hospital, Auditorium A, 115 W. Silver St., Westfield, MA Leader: Joyce Viecelli Phone: (413) 736-2422 Email: wviecelli@aol.com Time: 7:00 p.m. Dates: for meeting dates, contact Joyce at the above phone number
Worcester Support Group for Parents of Children with IBD Location: Worcester Medical Center/St. Vincent's Hospital, 1st Floor Conference Room D (near the cafeteria, follow signs), 123 Summer St., Worcester, MA Leader: Rose Wuoti Phone: Home: (978) 342-1117 or Cell: (978) 621-0671 Time: 6:30 p.m. - 8:00 p.m. Dates: 3rd TUESDAY OF EACH MONTH: May 17, 2008 (special speaker: see below); June 17, 2008
Special guest speaker Jennifer C. Jaff, Esq. from Advocacy for Patients with Chronic Illness. Saturday, May 17th from 10:00 a.m. - 1:00 p.m. Worcester Medical Center/St. Vincent's Hospital 123 Summer St., Worcester, MA 1st Floor, Conference Room B (near the cafeteria) Topics will include: Know your rights and Health Insurance (how to handle disputes the right way). Please RSVP to insure we have enough seating and handouts Rose Wuoti (978) 342-1117 home, or (978) 343-6662, ext. 123 work. This meeting replaces the regularly scheduled May meeting.
NEW HAMPSHIRE
Lebanon: *Please Note: meetings previously held in Lebanon, NH have been relocated to White River Junction, VT*
Manchester Location: Dartmouth Hitchcock Medical, East Conference Room, 100 Hitchcock Way, Manchester, NH 03104 Leader: Jade Riberdy, RN Phone: (603) 455-4667 Email: peacecreek_jade@yahoo.com Time: 6:20 p.m. - 7:50 p.m. Dates: MONDAY EVENINGS - call for dates. Dates: April 14, 2008; May 12, 2008; July 7, 2008; August 11, 2008; September 15, 2008.
RHODE ISLAND
Providence Support Group for Women with IBD Location: Women and Infants' Hospital, 100 Dudley Street, Lower Level Classroom, Providence, RI 02903 Leader: Nancy Botelho, RNP Phone: (401) 453-7953 Email: nbotelho@wihri.org Co-leader: Sumona Saha, MD Phone: (401) 453-7953 Email: ssaha@wihri.org Time: 6:30 p.m. – 8:00 p.m. Dates: 1st WEDNESDAY OF EACH MONTH BEGINNING WEDNESDAY, JANUARY 9, 2008
Providence Support Group for Parents of Children with IBD Location: Hasbro Children's Hospital IBD Support Group, Collis Board Room, 593 Eddy Street, Providence, RI 02903 Leader: Nancy Miller, RN Phone: (401) 444-5805 Email: nmiller@lifespan.org Co-leader: Russell Vigliotti Phone: (401) 831-7656 Email: mjrv184@worldnet.att.net Leaders: Kathy Scorpio, RN, Cindy Sokol, RN Time: 7:00 p.m. – 9:00 p.m. Dates: Please contact support leaders for group meeting dates
Providence Pediatric Patient Support Group Location: *Group meets simultaneously with Parent Support Group* Collis Board Room, 593 Eddy Street, Providence, RI 02903 (driving directions) Leader: Stephanie Atlas, LICSW (Clinical Social Worker) Phone: (401) 444-3247 Co-leader: Karen Swartz, CCLS (Child Life Specialist) Phone: (401) 444-5613 Time: 7:00 p.m. – 9:00 p.m. Dates: Please see above Parent Support Group Meeting Dates
VERMONT
White River Junction Location: White River Junction VA, 215 North Main Street, Bldg 44, White River Junction, VT. (driving directions) Leader: Theresa Hoisington Phone: 802-738-9533 Email: homeinvt@hotmail.com Time: 3:30 p.m. - 4:40 p.m. Dates: 2nd Tuesday each month, beginning June 10, 2008.
A New England Chapter Advocacy Committee has been formed to support current local and national legislative efforts that will improve the lives of individuals living with inflammatory bowel disease. If you are interested in being a part of the New England Chapter Advocacy Committee, please contact Education and Support Manager, Stacey Snyder by phone at: 781-449-0324 ext. 13 or via email: ssnyder@ccfa.org.
Current pending Massachusetts Legislation: The Restroom Access Act (Ally's Law)
Ally Bain, a Crohn's patient and teenager, experienced something that changed her life. While at a national retail clothing chain store with her mother, she suddenly had to use the restroom. They quickly ran to a manager to ask to use the employees-only restroom. But Ally was denied access and had an accident in the store. As she and her mother drove away, they vowed to never let that happen to anyone again.
With her family, friends, and State Rep. Kathleen Ryg, Ally worked to get a new law passed in Illinois. The law requires businesses to make employee-only restrooms available to people with inflammatory bowel disease and other medical conditions such as pregnancy and incontinence. The law states: A retail establishment that has a toilet facility for its employees shall allow a customer to use that facility during normal business hours if the toilet facility is reasonably safe and all of the following conditions are met:
The customer requesting the use of the employee toilet facility suffers from an eligible medical condition or utilizes an ostomy device.
Three or more employees of the retail establishment are working at the time the customer requests use of the employee toilet facility.
The retail establishment does not normally make a restroom available to the public.
The employee toilet facility is not located in an area where providing access would create an obvious health or safety risk to the customer or an obvious security risk to the retail establishment.
A public restroom is not immediately accessible to the customer.
There will be a hearing in front of the Joint Committee on Public Health on Wednesday, December 12, 2007 at the State House in Boston to determine if Ally's Law will move onto the House to be voted on. Please contact Stacey to see what you can do to help.
Thinking of selling or even junking your old car, RV, or boat? Instead, you can donate it to CCFA. With free towing, it's easy and you'll receive a tax deduction for your donation. Please call our office to learn more about this wonderful program! Or, you can donate your car online!
Become a CCFA Member today!
As a member of CCFA, you will help us further the cause while receiving special membership benefits. Membership benefits include subscription to the chapter newsletter and national magazine, discounts on CCFA books, and invitations to participate in chapter events and programs.
If you shop at Shaws, you can send us your old, unneeded receipts to further the cause! 1% of eligible purchases from submitted receipts will be sent to CCFA. (Only original receipts will be accepted; receipts must be dated January 1, 2007 or later; receipts will not be returned. Including the total on a note will be greatly appreciated.) Currently there is no end-date, so we can accept receipts at your convenience!
If you know of any other local stores offering to donate a portion of their proceeds from collected receipts, please notify Laura Bogart and we will gladly participate in their program as well.
Honor A Loved One With A Tribute Donation
Making donations on behalf of others or in memory of others is a meaningful way of recognizing commitment to an important cause.
You can make a tribute or memorial donation and have us send a tribute card (suggested minimum donation $25.00).
Upon receipt of your donation, we will send a Tribute card to notify the specified individual of your kindness. If no card type is specified, our CCFA Purple card will be sent.
Please note if you would like us to send you free request envelopes for future tributes.
For Tribute card purchases: Tribute cards may be purchased at $30 per packet of 6. Please specify type: Purple or Kids and blank, honor, or memorial (examples above).
VOLUNTEERS NEEDED!
We are always looking for volunteers to help with our walks. Volunteers may register to help at our walks by clicking on the registration links underneath the walk information (above). Or, for more information about our Take Steps walks, contact Take Steps Development Manager Elizabeth Aggott at eaggott@ccfa.org or 781-449-0324, extension 10.
Workplace Giving
The New England Chapter of CCFA is proud to participate in the workplace giving campaign of Community Health Charities. At many workplaces throughout New England, employees can direct contributions to the charity of their choice. Look for our name and agency code in your company campaign. If you don't find us, please ask your employer to add CCFA.
