where to getsupport

Living with a brain tumor is difficult both for the patient and their family. A good support system can help give you the strength you need to get through it.

Getting Support

brain tumor quoteWhen it rains look for rainbows. When it’s dark look for stars.-Unknown

The medical aspects of your case will be taken care of with extreme detail.  Surgery, follow up treatment that may be needed such as chemotherapy and radiation and any additional testing required will all be managed by your team of doctors.
It is important to remember that in addition to your physical health, attention must be paid to your emotional needs as well. These are all new issues that you are facing and it can begin to feel very overwhelming.  Ask for help if you need it. Support groups are an excellent resource and these days, patients have the alternative of getting telephone and online support when traveling is not an option.

BTF Support Groups

CAREGIVER ONLINE SUPPORT GROUP

The Brain Tumor Foundation, in conjunction with CancerCare, will offer a free 15-week online support group for Caregivers of patients with malignant brain tumors.

Start Date:  To be announced

Pre-registration is required.  This online group is a safe, confidential space where caregivers can give and receive support, information and guidance at their convenience.

This group will be moderated by a licensed, CancerCare oncology social worker.

MALIGNANT BRAIN TUMOR SUPPORT GROUP

The Brain Tumor Foundation, in conjunction with CancerCare, will offer a free 12-week telephone support group for people with malignant brain tumors.

Start Date: Wednesday, February 1, 2017

Pre-registration is required.  To register, please contact Gerry at 212.265.2401 or e-mail  gerry@braintumorfoundation.org.

This group will be moderated by a licensed, CancerCare oncology social worker.

Face to Face Support Groups

The Brain Tumor Foundation provides this state-by-state list of organizations across the country that sponsor support groups for brain tumor patients, survivors and caregivers. To submit a group to be posted, or to let us know about any group updates, please contact us at 212.265-2401.

ARIZONA

Grey Matters Foundation
Held at the Barrow Neurological Institute
St. Joes Hospital
28905 N. 65th St.
Cave Creek, AZ 85331
Meets: the 4th Tuesday of every month 6:00 pm at the hospital.
Contact: Lanette Veres, 623.205.6446

Southern Arizona Brain Tumor Support
Co-sponsored by the Arizona Cancer Center and the
Social Work Department of the University Medical Center
Arizona Cancer Center
1515 N. Campbell Avenue, Room 2920
Tuscon, AZ
Meets: 2nd Wednesday morning of every month, 10:30 am – noon
Contact: Marsha Drozdoff, 520.694.4605

Banner Thunderbird Medical Center
A support group for people who have been diagnosed with cancer, family members and friends use shared experiences and emotional support to help members cope. Registration required.

5555 W. Thunderbird Road, Medical Outpatient
Library, Glendale, Arizona
Meets: 2nd and 4th Wednesdays, 6:30- 8 p.m.
Contact: Kelly Gruber, LMSW at 602.865.5450 or kelly.clark-gruber@bannerhealth.com

Wellness Community
Offers a brain tumor networking group that meets twice a month and programs in Spanish.
360 East Palm Lane, Phoenix, Arizona
Meets: 2nd Tuesday of Month, 6 – 8 p.m.
Event URL: www.twccaz.org
Contact: Tracy Thurston, Assistant Director at 602.712.1006 or info@twccaz.org

CALIFORNIA

Maxine Dunitz Neurosurgical Institute
Brain Tumor Educational Support Group
Cedars-Sinai Medical Center
8631 W. 3rd St.
Suite 800E
Los Angeles, CA 90048
Meets: Quarterly from 6:30 – 8:30 pm
Contact: Nick or Linda O’Connor, LCSW, 310.423.0837

San Francisco Brain Tumor Support Group
UCSF
521 Parnassus Avenue
Medical Science Bldg.
Room C-130
San Francisco, CA
Meets: 1st Wednesday of each month, 7:00 – 8:30 pm
Contact: Mary Lovely, RN, 415.990.4461 or mary.lovely@sbcglobal.net
Please Call to Register

The Sacramento Area Brain Tumor Support Group
Lawrence J. Ellison Ambulatory Care Center
4860 Y St., Room 3015
Sacramento, CA
Meets: 1st Thursday of each month from 6:30 – 8:30 pm
Contact: Karen Smith, 916.734.5613
Note: Speaker every month with a sharing meeting in between

The Wellness Community Brain Tumor Support Group
530 Hampshire Rd.
Westlake Village, CA
Meets: 1st Thursday of each month from 6:30 – 8:30 pm
Contact: Rebecca Dekker, 805.379.4777

Thornton Hospital Campus Point Lycan Room,
La Jolla, California

A volunteer run self help group for brain tumor patients, family members and caregivers.  The group focuses on sharing.
Meets: 3rd Saturday of the month, 10:30 – 11:30 a.m.
Contact: Barbara Weinman at 858.484.9549

Cancer Support Community 
1990 South Bundy Drive, Suite 100,
Los Angeles, California
Meets: 1st and 3rd Monday, 7 – 9 p.m.
Event URL: http://www.cancersupportcommunitybenjamincenter.org/calendar/support-groups.html
Contact: Malcolm Schultz at 310.314.2555 or mschultz@cancersupportcommunitybenjamincenter.org

Community Hospital of the Monterey Peninsula,
Cancer Center Classroom, Monterey, California

This support group focuses on the emotional, psychological and informational needs of those experiencing cancer — firsthand or as a support person.
Meets: Weekly on Monday & Tuesday, 4 – 6 p.m.
Event URL: http://www.chomp.org/classes-events/event-search-results-detail/?eventId=0238447e-db51-de11-8762-00237decc4f2#Description
Contact: Sandra Kahn at 831.625.4753

Cancer Center of Santa Barbara
Offers a brain tumor support group for patients and family members.
540 West Pueblo Street, Santa Barbara, California
Meets: 3rd Thursday of the month, 5:15 – 6:30 p.m.
Contact: Cathie Nelson, LCSW at 805.682.7300 or cathie@ccsb.org

Brain Tumor Center
Offers a pituitary and brain tumor support group for patients, friends and family members.
2200 Santa Monica Boulevard, 2nd Floor,
Santa Monica, California
Meets: Bi-Monthly. Starts in February. Check website for schedule, 6:30 p.m. -8:00 p.m.
Event URL: http://newstjohns.org/BTC_Brain_Tumor_Patient_Support_Group.aspx
Contact: Meeting Facilitator: Sharmyn McGraw, 888.410.3334,  Pituitarybuddy@hotmail.comwww.hormones411.org or www.brain-tumor.org
Co-Facilitator: Krystina Trzaskowski, Klt63@att.net

COLORADO

The Patient & Family Support Group for Brain Tumor Patients
Swedish Medical Center
701 E. Hampden Avenue, Suite 415
Englewood, CO 80113
Meets: 1st Wednesday of the month from 5:30 – 7:30 PM
Contact: Lorre Gibson, 303.806.7420

University of Colorado Anschutz Outpatient Pavilion 
1665 Aurora Court, Room 2005,
Aurora, Colorado
Offers brain tumor support for patients, family member and friends. Snack provided.
Meets: 1st Wednesday of the month, 5 – 7 p.m.
Contact: Susanne Cook, RN at 720.848.0300

Craig Family Hospital Outpatient Clinic
“Hang Out” is a group of brain injury survivors, friends, family, medical professionals and other interested parties that meet weekly to share resources, network, and socialize.
3427 South Emerson,
Englewood, Colorado
Meets: Weekly on Thursdays, 12:30 – 3 p.m.
Event URL: http://biacolorado.org/support/support-groups/
Contact: 720.341.8437

CONNECTICUT

Brain Tumor Group for Patients and Families
20 York Street, 6323
New Haven, CT 06510
Meets: 2nd Tuesday of each month from 2:00 – 3:30 pm
Contact: Angela Thomas, LCSW at 203.688.7528

Ann’s Place
Offers a a group for men & women surviving cancer.  Registration is required.
80 Sawmill Road, Danbury, Connecticut
Meets: 1st & 3rd Mondays, Call to register
Event URL: http://www.annsplace.org
Contact: Registration at 203.790.6568.

Helen & Harry Gray Cancer Center 
Adult brain tumor support group for patients with primary brain tumors and their caregivers.
Advance contact with support group leader is required prior to attending the first meeting.
85 Retreat Ave., Hartford, Connecticut
Meets: 1st Thursday of Month, 5:30 – 7:30 p.m.
Contact: Erin Mangan, RN at 860.545.5808 or erin.mangan@hhchealth.org

FLORIDA

Cancer Support Community
3900 Clark Road, Bldg. P-3
Sarasota, FL 34233
Meets: 1st & 3rd Monday of each month from 5:30 – 7:00 pm
Contact: Andrea Feldmar, Program Director, 941.921.5339

St. Anthony’s Hospital
1200 Seventh Avenue North
St. Petersburg, FL 33705
Meets: 2nd Tuesday of each month from 5:30 – 7:00 pm
Contact: Reverend Al Hall, Pastorial Manager, 727.825.1103

Florida Brain Tumor Association
Gulf Coast Branch Support Group
5965 Adele Court
Ft. Meyers, FL 33919
Meets: 3rd Tuesday of each month from 6:30 – 8:00 pm
Contact: Donna Ross, 239.433.4396

Florida Brain Tumor Association
Bethesda Memorial Hospital
2815 South Seacrest Blvd.
Boynton Beach, FL 33435
Meets: 2nd and 4th Tuesday of each month from 3:00 – 4:30 pm
Contact: Lynn Edinoff, 561.737.7733 ext. 4948

Lake County Brain Tumor Support Group
700 N. Palmetto St.
Leesburg, FL 34748
Meets: 1st Thursday of each month from 6:00 – 8:00 pm
Contact: Terry Andrews, 352.343.9126

Boca Raton Regional Hospital, Educational Center, Classroom C 
Offers support to brain tumor survivors, their families and friends.
800 Meadows Road, Boca Raton, Florida
Meets: 2nd and 4th Thursdays of Month, 7:30 p.m. – 9 p.m.
Contact: Sheryl Shetsky at 954.755.4307 or sheryl@floridabraintumor.com

Memorial Regional Hospital
The group is open to patients, family members and friends. Participants share information, experiences and concerns.
3501 Johnson Street, 7 South Conference Room,
Hollywood, Florida
Meets: 3rd Thursday of Month, 7:30 – 8:30 p.m.
Contact: 954.518.5546 for registration.

Florida State College Jacksonville – Deerwood Center
Offers a brain tumor support group for patients, family members and caregivers to learn more about brain tumors and to find out how other people are dealing with issues they face as a result of this diagnosis.
9911 Old Baymeadows Road, Jacksonville, Florida
Meets: 3rd Saturday of Month, 10 – 11:30 a.m.
Contact: Kay Verble, Executive Director at 904.273.8755 or kverble@sontagfoundation.org

Cancer Support Community – Greater Miami
Offers a professionally facilitated support group to share feelings and concerns about particular diagnoses, treatment outcome or other related matters. It is an opportunity to share problems and solutions, as well as support and inspiration. Family members and caregivers are welcome.
8609 South Dixie Highway, Miami, Florida
Meets: 4th Monday of Month, 6 – 8 p.m.
Contact: Dr. Peggy Rios, Program Director or Mae Greenburg, MCHC, Facilitator at 305.668.5900

H. Lee Moffitt Cancer Center & Research Institute 
Offers a brain tumor support group open to primary and metastic brain tumor patients, family members and friends to provide support and information. RSVP to 813-745-8407.
13131 Magnolia Drive, Psychosocial Clinic, Tampa, Florida
Meets: 1st Saturday of Month, 10 – 11 a.m.
Contact: Rosemary DeMarco, MSW at 813.745.7267 or demarcor@moffitt.usf.edu; Mary Turney,

GEORGIA

Brain Tumor Support Group Meeting
for Brain Tumor Survivors, Family, Friends, and Caregivers
The Wellness Community
Peachtree Dunwoody Pavilion
5775 Peachtree Dunwoody Road
Building C, Room 225
Atlanta, Georgia 30342
Meets: 2nd Tuesday of the month from 7:00 – 8:30 pm
Contact: Farnaz Arabshahi at 404.668.9511 farnaz.arabshahi@emoryhealthcare.org

University Cancer Center & Blood Center and
Loran Smith Center for Cancer Support, Griffin-DuBose Healing Lodge

Free parking available. Light refreshments served. Persons diagnosed with brain tumors and their caregivers are invited to a multidisciplinary support and education program to meet with other families, ask questions of medical professionals and receive support in coping with brain tumors.
240 Talmadge Dr., Athens, Georgia
Meets: 1st Tuesday of Month, 5:30 p.m. – 7 p.m.
Contact: Paige Campbell, Ed.D., LCSW, OSW-C at 706.353.5010 or Joel Siebentritt, LCSW at 706.475.4900

Emory University 
Monthly support group for adult patients with malignant brain tumors, their families, friends and caregivers.
1365 Clinton Road NE, Suite 2200-B , Atlanta, Georgia
Meets: 1st Thursday of Month, 12:30 p.m.
Event URL: https://winshipcancer.emory.edu/patient-care/WinshipContentPage.aspx?nd=702
Contact: Maxine at 404.778.3091 to register.

Northside Hospital- Forsyth
Support group for brain cancer patients and caregivers. Light refreshments will be provided.
1200 Northside Forsyth Drive, Education Center, Rm F, Cumming, Georgia
Meets: 4th Tuesday of month, 11:30 a.m. – 12:45 p.m.
Event URL: http://www.northside.com/forsyth
Contact: Laura Karfeld, LCSW at laura.karfeld@northside.com or 770.667.4117, Kyeda King, LCSW at kyeda.king@northside.com or 770.292.7028
RSVP required 3 days prior to each scheduled group date 770.667.4117.

ILLINOIS

Brain Tumor Support Group
Northwestern Memorial Hospital
675 N. St. Claire Street, Ste. 20-250
Chicago, IL
Meets: 3rd Monday of each month from 5:00 – 6:00 pm
Contact: Mary Ellen Maher Deleon, 312.695.8143

Brain Tumor Support Group
for Patients Dealing with Brain Tumors
Central Dupage Hospital
25 North Winfield Road
Winfield, IL 60190
Contact:  Steve Hazard at 630.933.2874

Cancer Support Center
2028 Elm Road,
Homewood, Illinois
Offers monthly support groups for brain tumor patients and their family members.
Meets: 1st Thursday of the Month, 6 p.m.
Event URL: http://www.cancersupportcenter.org
Contact: Jean Arzbaecher, RN, MS, APN at 773.702.9869 or jarz513@hotmail.com

IOWA

Quad Cities Brain Tumor Support Group
Genesis Medical Center West
Davenport, Iowa
Meets: 4th Monday of each month from 6:30 – 8:00 pm
Contact: Deb Ide at 563.421.1107

MASSACHUSETTS

“The Brainstormers”
Brain Tumor Survivor Support Group
180 Mass Avenue, Suite 301
Arlington, MA
Meets: 2nd Saturday of the month, 10 am – Noon
Contact: Debbie DeMella, 617.543.1709

Parent Education/Support Group
(for parents of children with brain tumors)
Dana Farber Cancer Institute, Smith Family Rm.
44 Binney St.
Meets: Call for details
Contact: Heather Budd, 617.632.4217

Massachusetts General Hospital
Brain Tumor Patient and Caregiver Support Group
55 Fruit Street
Yawkey Building, 10th floor
Room 10650
Meets: 2nd and 4th Monday of each month, 12:00 pm – 1:30 pm
Contact: Michele Lucas, MSW, LICSW, 617.726.1061

Dana Farber Cancer Institute
Brain Tumor Support Group for adult patients and their caregivers
Smith Building, Room 764
Meets: 1st and 3rd Friday of each month 1:30 – 3:00 PM
Free Parking, Free Admission
Contact: Nancy Tharler LICSW at 617.632.3634. Please Call to Register

Lahey Clinic Medical Center
Brain Tumor Patient and Caregiver Support Group
41 Mall Road
Burlington, MA 01805
Meets: 1st & 3rd Monday each month, 7:00 – 9:00 pm
Contact: Michele Lucas, MSW, LICSW, at 617.726.1061

University of Massachusetts Medical Center
Brain Tumor Support Group
55 Lake Avenue North
Aaron Lazare Research Building
Room 203
Meets: 1st Tuesday of the month, 6:00 – 8:00 pm
Contact: Ellen Shorenow, PhD, 508.334.7595

Baystate Neurosurgery Associates 
Offers a brain tumor support group open to patients as well as family members.
2 Medical Center Drive, Suite 503, Springfield, Massachusetts
Meets: Last Wednesday of Month, 5 p.m.
Contact: Narvis Handford at 413.794.4440 or narvis.handford@bhs.org

Baystate Franklin Medical Center
Offers a support group for individuals with all types of cancer. Brain tumor patients and their family members are welcome.
164 High Street, Oncology Waiting Room, Greenfield, Massachusetts
Meets: 1st Wednesday of Month, 7 – 8:30 p.m.
Contact: Vicki Sutton, MSW, LCSW at 413.773.2570 or vidki.sutton@bhs.org

NEBRASKA

Brain Tumor Support Group
For brain tumor patients and their friends, family members and caregivers
Sponsored by Immanuel Medical Center-Alegent Health
Immanuel Medical Center

6901 North 72nd Street
Holling Center-Happy Hollow Room
Omaha, NE 68122
Meets: 3rd Tuesday of each month from 5:00 – 6:00 pm
Contact: Mary Nastase, 402.572.2768
Light snack provided

Nebraska Medical Center – Cowdery Care Center
Emile and 42nd Streets,
Omaha, Nebraska
This group welcomes patients, family members and caregivers for support and discussion.
Meets: Various; Time: Various
Contact: Susan Stensland, LCSW at 402.559.4676 or 402.559.4420 for more information.

NEW JERSEY

Carole G Simon Cancer Clinic
99 Beauvoir Avenue
Summit, NJ 07901
Contact: Maggie Brady, MSW, LCSW, 908.522.5255

Central New Jersey Brain Tumor Support Group
300 Clinton Ave.
North Plainfield, NJ 07060
Meets: 1st Thursday of each month at 7:00 pm
Contact: Virginia or Stan, 908.685.0917 or
Patty Anthony, RN, 732.321.7000 ext. 62874

Acoustic Neuroma Support Group
Sponsored by the Acoustic Neuroma Association of New Jersey
100 Cole La. Apt. 401
Lawrenceville, NJ 08648
Contact: Wilma Ruskin, 609.799.4442

Monmouth and Ocean County Brain Tumor Support Group
Wall Township Branch of the Monmouth County Library
2700 Allaire Road
Wall, NJ 07719
Contact: Nancy Conn-Levin or Bruce Blount, 609.758.0806

New Jersey Medical School
Brain tumor patient, survivor and caregiver support group at UMDNJ
Department of Neurological Surgery
Doctors Office Center, 90 Bergen Street, Suite 8100
Newark, NJ 07103
Meets: 3rd Thursday of each month from 5:00 – 6:30 pm
Contact: LaDawn McClamb, MS, ATC, 973.972.1164

Bayonne Medical Center
Offers support groups for all cancer patients, friends and family members.
W. 29th St. and Avenue E, Bayonne, New Jersey
Meets: Monthly on the 2nd Wednesday, 7 p.m.
Contact: Barbara Hoginski at 201.823.9980 or bh175@aol.com

Various
Long Branch, New Jersey
This is a support group specifically for spouses or partners who have lost a loved one to a brain tumor.
Date: Call for information; Time: Call for information
Contact: Wendy Berk, LSCW @ 732.672.7165  or berk6@optoline.net

Robert Wood Johnson Hospital
Offers a monthly brain tumor support group of patients, family members and caregivers.
1 RWJ Place, First Floor Conference Room, New Brunswick, New Jersey
Meets: Monthly on the 3rd Wednesday, 7 p.m.
Contact: Kathleen Johnson for registration at 732.418.8110 or Kathy Furnbach, Facilitator, at furnbace@umdnj.edu.

Doctors Office Building
Offers a monthly group of survivors and caregivers.
90 Bergen Street – Suite 8100, Newark, New Jersey
Meets: Monthly on the 3rd Thursday, 5 p.m. – 6:30 p.m.
Contact: LaDawn McLamb, MS, ATC (mcclamls@umdnj.edu) or Sima Faris, MSW, LSW

NEW YORK

Bereavement Group
for cancer-related loss
Monter Cancer Center
450 Lakeville Rd
New Hyde Park, NY 11042
Pre-registration is required
Contact: Majorie Fricano, RN, 516.562.2825

Brain Tumor Support Group
Northwell of Manhasset Hospital
Kaufman Board Room, 1st Floor
300 Community Dr
Manhasset, NY 11030
Pre-registration is required
Contact: Eileen Fusco, NP, 516.562.3025
Louise Anne Purcell, NP, 516.562.3058

New York Presbyterian Hospital Weill Cornell Medical Center
Support group for newly diagnosed patients (within 3 months)
Myra Mahon Patient Resource Center
1305 York Avenue, 2nd Floor, Room Y-206
New York, NY 10021
Meets: Weekly March 25 – April 29, 2010 from 3:00pm – 4:00pm
Contact: Wendy Mitchell, LCSW, 212.746.3896 or wem9011@nyp.org

Look Good…Feel Better (I)
Monter Conference Room
The Don Monti Memorial Research Foundation
Pre-registration is required,
1 to 3 p.m. One Monday per month, please call for dates
Contact: Donna Vignola, LCSW, 516.734.8816

Look Good…Feel Better (II)
Long Island Jewish Medical Center (Northwell)
Oncology Building
C-Level
Pre-registration is required
1:30 to 3:30 p.m., One Monday per month, please call for dates
Contact: Sharon Lerman, LCSW, 718.470.8964

Long Island Adult Brain Tumor Support Group
43 Atlas Avenue
Malverne, NY 11565
Contact: Bob Crescenzo, 516.996.3705

The Guardian Brain Foundation Support Group for
Patients with Brain Tumors and Their Families
North Bellmore Public Library
1551 Newbridge Road
North Bellmore, NY
Meets: One day a month from 7:00 pm – 9:00 pm
Contact: Donna Vignola, MSW, LCSW, 631.271.3292 or visit www.guardianbrain.org

The Guardian Brain Foundation Care Together Support Group
Commack Public Library
18 Hauppauge Rd.
Commack, NY
Meets: 1st Tuesday of each month from 7:00 pm – 9:00 pm
Contact: Susan Schell at 631.368.2326

Memorial Sloan-Kettering Cancer Center
Offers a monthly psycho-educational program for brain tumor patients and caregivers.
Location changes, New York, New York
Meets: 2nd Thursday; Time: Call to register
Contact: Call 646.888.4740 or email rlac@mskcc.org for further information or to register.

Strong Memorial Hospital Wilmot Cancer Center 
601 Elmwood Avenue, Rochester, New York
Offers monthly meetings for brain tumor patients, family and friends.  Offers support and networking for adults diagnosed with primary malignant brain tumors.  Registration required.
Meets: 1st Monday of Month; Time: Call for time
Contact: Barbara K. Guttman, LMSW, Oncology Social Worker at 585.275.4631

NORTH CAROLINA

Buddy Kemp Cancer Support Center
242 Colonial Ave.
Charlotte, NC 28207
Meets: 2nd Thursday of each month at 6:30 pm
Contact: Marcia Lampert at 704.384.5223

WNC Brain Tumor Support
46 Samayoa Place
Asheville, NC 28806
Meets: 3rd Thursday of each month from 6:15 – 8:00 pm
Contact: George Plym, 828.691.2559

OHIO

Cleveland Clinic Brain Tumor Support Group
Taussig Cancer Center, R Building
Conference Room R3-003
3rd floor (across from the elevator)
Corner of 90th St and Euclid Ave.
Cleveland, OH 44195
Meets: 4th Wednesday of each month at 5:00 pm
Contact: Kathy Lupica, 216.445.6910

The Stefanie Spielman Comprehensive Breast Center
This support group is available to anyone diagnosed with a brain tumor, as well as their caregivers. Participants guide the conversation of this informal, small group discussion, which focuses on any and all concerns related to the disease. Topics may include, but are not limited to the physical, social and emotional challenges of living with a brain tumor. Please call to confirm meeting date and time.
1145 Olentangy River Road, 2nd Floor, Suite 2100,
Columbus, Ohio
Meets: 3rd Thursday of the month, 6 – 7:30 p.m.
Contact: To register, please call JamesCare for Life at 614.293.6428 or visit cancer.osu.edu/go/support.

Kettering Medical Center – Wallace Kettering Neuroscience Institute
Offers care, concern and education to brain tumor patients and family members.
3535 Southern Boulevard, Kettering, Ohio
Meets: Call for information
Contact: Marilyn Reed, RN at 937.298.3399×55299 or marilyn.reed@khnetwork.org

Cancer Support Community – Lynn Stern Center
A professionally facilitated brain tumor networking group for individuals with brain tumors and their loved ones.
4918 Cooper Road, Blue Ash, Ohio
Meets: Call for information
Event URL: http://www.cancersupportcincinnati.org/
Contact: Kelly Schoen, LISW-S at 513.791.4060

OKLAHOMA

Oklahoma Wellness Class
For Brain Tumor Patients and Caregivers
730 West Wilshire Blvd. Suite 114
Meets: 4th Thursday of every month at 6:00 pm
Contact: Nancy Thomason, Patient Navigator, or Francis  405.843.4673 to register

Oklahoma City Strong Mind, Strong Body, Strong Spirit Support Group
For Brain Tumor Patients and Caregivers
Various locations in Oklahoma City
Meets: 2nd Thursday of every month at 6:00 pm
Contact: 405.843.4673 for location and to register

Oklahoma Brain Tumor Foundation
Strong Mind, Strong Body, Strong Spirit Wellness Classes feature speakers who discuss a variety of topics.
Hear and share stories with others, and meet people experiencing the same life challenges.
720 W. Wilshire Boulevard, Suite 101A,
Oklahoma City, Oklahoma
Meets: 3rd Thursday of Month, Except for January and December, 6- 8 p.m.
Contact: Jan Rush at 405.843.4673 or patientnavigator3@okbtf.org to register

1430 S. Erie Ave., Tulsa, Oklahoma
This support group has been developed to meet the needs of those affected by brain tumors be they patients, family members, friends, or caregivers. Each month the meeting will begin with time to visit with one another and enjoy refreshments followed by a brief health and well being presentation from an area expert. Please RSVP so there will be plenty of snacks for everyone.
Meets: 1st Tuesday of Month, 6 p.m. – 8 p.m.
Event URL: http://integrativewholisticsolutions.com/support-groups.php
Contact: Regina Ann Benpz at 918.695.5876 or resonance.reginaann@gmail.com to register.

OREGON

Portland, Oregon Brain Tumor Support Group
Good Samaritan Hospital
Comprehensive Cancer Center
1130 NW 22nd Ave.
Portland, Oregon 97210
Meets: 1st and 3rd Wednesdays of each month from 4:00 – 5:30 pm
Contact: Wendy Talbot at 503.413.7921

Legacy Health
Patients and families are welcome.
First Wednesday: informational guest speaker.  Third Wednesday: time to share.
1130 NW 22nd Street, Room 219, Portland , Oregon
Meets: 1st and 3rd Wednesday, 4 – 5:30 p.m.
Contact: Wendy Talbot, LCSW at 503.413.7921 or wtalbot@lhs.org

PENNSYLVANIA

Brain Tumor Support Group Of The Lehigh Valley
St. John’s Lutheran Church
501 Chestnut St.
Emmaus, PA 18049
Meets: 2nd Tuesday of each month at 7:30 pm
Contact: Dolores Fioriglio, 610.830.0659

Pittsburgh Area Brain Tumor Support Group
Bloomfield Center
4117 Liberty Ave.
Pittsburgh, PA
Meets: 1st and 3rd Wednesdays, 7:00 – 8:30 pm
Contact: Bonnie

Perelman Center for Advanced Medicine, University of Pennsylvania 
Patient and Family Services Conference Room,
1 West Pavilion Perelman Center for Advanced Medicine
3400 Civic Center Boulevard,
Philadelphia PA 19104
Meets: Tuesday afternoons, 2:30-4:00 PM

  • June 17 – “Social Security disability – Navigating the application process” – Richard Gaudiosi, Public Affairs Specialist at Social Security Administration
  • July 15 – “Legacy project – Ways to celebrate the gift of you for those you love” – Sandy Blackburn, BA, MSW candidate
  • August 19 – “Adjusting to life post-treatment – A psychological perspective” – Dr. Mark Moore, Ph.D clinical psychologist
  • September 16 – “Symptom management – Headaches and seizures” – Alisha Amendt, CRNP and Rachael Mealey, CRNP
  • October 21 – “Neuropsychology testing – Explore your cognitive functioning” – Dr. Kathy Lawler, D.Phil

Contact: 215.615.5240. If you have questions. Registration is recommended.

Jefferson Hospital for Neuroscience, 3rd Floor Conference Room
Offers a brain tumor support group for patients and family members. Free parking and most park in the garage attached to Jefferson Hospital for Neuroscience, the entrance is on 9th at Locust Street. Light snacks provided.
900 Walnut Street, Philadelphia, Pennsylvania
Meets: 2nd Thursday of the Month, 7 – 8:30 p.m.
Contact: Joseph McBride, BA, BSN, RN at 215.955.4429 or joseph.mcbride@jeffersonhospital.org or Katlyn Salvatore, BSN, RN at 215.955.4429 or katlyn.salvatore@jefferson.edu

Silverstein Building, Neurosurgery Conference Room, 3rd Floor
The group provides an opportunity for support, sharing, and education.
Philadelphia, Pennsylvania
Meets: 2nd Wednesday of Month, 6:30 p.m. – 8:00 p.m.
Event URL: http://www.penncancer.org/patients/support-and-resources/support-groups/
Contact: Arbena Merolli, MSW or Karen Albright, MSN, CRNP at 215.615.5240

TENNESSEE

Memphis Regional Brain Tumor Survivors Group
Methodist University Hospital
Dorothy & James Graham Neuroscience Education Room, 4th Tower
1265 Union Avenue
Memphis, TN 38119
Meets: 1st Thursday of each month at 6:30 pm
Contact: Cherry Welborn at 901.757.0806 or cherrywel@earthlink.net or midsouth-brain@hotmail.com

Colonial Park United Methodist Church
5330 Park Avenue, Memphis, Tennessee
A group of brain tumor survivors and caregivers meet on the first Thursday of each month.  Persons may bring something to eat/drink for supper while we meet.  Open to all.  Handicapped parking and access is available. No childcare on site.
Meets: 1st Thursday of Month, 6:30 p.m.
Contact: Rhonda W. Harris at 901.482.8636 or 901.233.0466 or rhondawharris@aol.com

TEXAS

Grey Matters North Texas Brain Tumor Support Group
HealthSouth Plano Rehabilitation Hospital
2800 W. 15th Street
Plano, TX 75075
Meets: 2nd Tuesday of each month from 7:00 – 9:00 pm
Contact: Dr. Jay Duhon, 972.769.8940

Houston Area Brain Tumor Network Support Group
The University of Texas M.D. Anderson Cancer Center
1515 Holcombe Blvd.
Houston, TX 77030
Meets: 2nd and 4th Tuesday of each month from 3:00 – 4:00 pm
Contact: Rebecca Savoie or Suki Gibson at 713.794.1777

San Antonio and Surrounding Area Brain Tumor Group
Health South Riosa
9119 Cinnamon Hill
San Antonio, TX 78229
Contact: Teresa Zdansky, 210.386.5608

“Your Grey Does Matter”
Brain Tumor Support Group
CTRC Library (Grossman Building)
7979 Wurzbach
San Antonio, Texas 78229
Contact: Teresa Zdansky. 210.386.5608

Moncrief Cancer Institute
400 W. Magnolia Ave., Ft. Worth, Texas
Meets: 3rd Thursday of Month, 6:30 p.m. – 8:00 p.m.
Contact: Valerie Oxford, LBSW, MSSW, OSW-C at 817.288.9812 or valerie.oxford@moncrief.com

Houston Methodist Hospital
Informative and supportive group that welcomes patients, family members, caregivers and health care professionals.  Dinner is included.  Parking is free.  Meetings are not held in November or December.
6565 Fannin Street, Houston, Texas
Date: 4th Thursday, except November & December, 6:30-8:30pm
Event URL: http://www.methodisthealth.com/brain-tumor-support
Contact: Kimbra Harris, CCRP at 713.441.3800 or braintumor@houstonmethodist.org

MD Anderson Cancer Center
Provides information and a network of support for brain tumor patients and their families. Expert guest speakers on a variety of topics.
1515 Holcombe Boulevard, Houston, Texas
Meets: 3 to 4 times per year; Time: Call for information
Contact: Sarah Hines, LMSW at 713.792.0772 or sahines@mdanderson.org, or 
Rebecca Savoie, LCSW at 713.794.1777 or rsavoie@mdanderson.org

Warm Springs Rehabilitation Hospital
Offers a brain tumor support group for patients, caregivers and survivors.
14747 Jones Maltsberger Rd., San Antonio, Texas
Meets: 2nd Tuesday of Month, 7 – 8:30 p.m.
Contact: Teresa Miller Zdansky at 210.386.5608

VIRGINIA

Life with Cancer Family Center
Brain Tumor Group
INOVA Health System
2832 Juniper St.
Merrifield, VA
Meets: 1st Tuesday of the month
Contact: Vera Hirschman, R.N., 703.776.3425

St. Mary’s Hospital Education Center
Offers a brain tumor support group for patients, families and friends.
5801 Bremo Road, Richmond, Virginia
Meets: 2nd Tuesday of Month; 7 p.m. – 9 p.m.
Event URL: http://www.curebraintumor.com
Contact: Nancy Hsu, Facilitator, at 804.424.0196 or curebt@hotmail.com

Wellspring
Offers a monthly educational program for patients, families and friends in which to learn, share and support one another.
525 Amherst Street, Conference Room, Winchester, Virginia
Meets: 4th Thursday; February through October, 6:30 p.m.
Contact: 540.536.4981 for registration

WASHINGTON

University of Washington Medical Center
Open to all brain tumor patients, survivors, family members, friends and caregivers.
You are invited to join the BTSG members who meet in the Plaza Cafe area for dinner prior to the 5:30 meeting time.

Parking is available in the UMWC Triangle Garage. Parking stickers for reduced parking rates may be available from your medical provider.
1959 NE Pacific St., SW110, Plaza Cafe, Meeting Room B, Seattle, Washington
Date: 1st Wednesday of month, 5:30 p.m. -7:30 p.m.
Contact: Patient contact: Yvonne Brehan at btsg@comcast.net

WISCONSIN

Neurospine Center
5320 West Michaels Drive, Appleton, Wisconsin
Offers a brain tumor support group, as well as financial assistance.
Meets: Call for information
Contact: David Bond, APNP at 920.882.0818 or dbond@nscwi.com

Sacred Heart Hospital
This group provides information, education and support
900 West Clairemont Avenue, Eau Claire, Wisconsin
Meets: Call for information
Contact: Rhonda Olson, SW at 715.717.4392 or rolson@shec.hshs.org

Gundersen Lutheran Medical Center
1900 South Avenue, LaCrosse, Wisconsin
Offers a brain tumor support group providing education and discussion.
Meets: Call for information
Contact: Polly Davenport-Fortune, MSN, NP at 608.775.2952 or padavenp@gundluth.org

University of Wisconsin Hospital
600 Highland Avenue, Madison, Wisconsin
Offers a support group for individuals with brain tumors, their family members and caregivers.
Meets: Call for information
Event URL: https://www.uwhealth.org/onlineservices/classes/class/viewClass/227
Contact: Lori Hayes, RN, MS, Clinical Nurse Specialist at 608.265.1192

Froedtert Hospital – Clinical Cancer Center
9200 Wisconsin Avenue, Milwaukee, Wisconsin
Offers a brain tumor support group for patients, family members and friends.
Meets: Call for information
Contact: Renae O’Keefe, RN at 414.805.0271 or rokeefe@froedterthealth.org

Online Support Groups

The Brain Tumor Foundation provides this state-by-state list of organizations across the country that sponsor online support groups for brain tumor patients, survivors and caregivers. To submit a group to be posted, or to let us know about any group updates, please contact us at 212.265.2401.

CLEVELAND CLINIC ONLINE HEALTH CHATS

Get answers to your health questions and concerns as part of live chats led by Cleveland Clinic physicians and health educators.

Cleveland Clinic Online Health Chats

Upcoming chat on Friday, July 16 at 12 Noon (Eastern time):
Adult Brain Tumor Metastasis with Gene Barnett, MD, FACS.

ASTROCYTOMA (PILOCYTIC) SUPPORT GROUP

Support Group for adults, parents and caregivers who have a loved one who has been diagnosed with this specific type of tumor. Provides more specific information and support about this tumor for those in need.

Membership is required, contact the Astrocytoma Yahoo Support Group

BEREAVEMENT SUPPORT GROUP

Designed to support family members and friends in their grief of losing a loved one due a brain tumor. Support is shared among list members via on line discussions.

Membership is required, contact the Bereavement Yahoo Support Group

BRAINSTEM GLIOMA MAILING LIST

A group of brainstem glioma patients, parents, caregivers and medical professionals who exchange messages on the internet. Everyone is welcome to join.

Contact the Brainstem Glioma Mailing List

CRANIOPHARYNGIOMA SUPPORT GROUP

The Craniopharyngioma Online Support Group was founded in 1996 and currently consists of over 400 craniopharyngioma patients, caregivers and medical professionals. Anyone who falls in these categories is welcome to join.

Due to similarities in treatment and outcome, patients with Rathke’s Cleft Cysts are also welcome. Group communication is by a private email list hosted by T.H.E. BRAIN TRUST, a 501(c)(3) nonprofit organization specializing in internet based and patient oriented brain tumor support groups.

Contact the Craniopharyngioma Support Group

HYPOTHALAMIC HAMARTOMA SUPPORT GROUP

Caregiver Support

The role of caregiver in a patient’s life is critical and comes with a myriad of challenges that can often become overwhelming.

brain tumor quoteOnce you choose hope, anything is possible.-Christopher Reeve

Caregivers not only face the physical demands of caring for a patient but are also called upon to provide the emotional support that is so often needed. Caregivers themselves however, often ride an emotional roller coaster, running the gamut from sadness, to anger and worry.  It is difficult to watch someone you care about experience the ups and downs that come with so many illnesses. Here are a few tips that will help you better cope as you take on your new role:

Become informed.
Knowledge is power.

  • Educate yourself.  Know the diagnosis and tumor type.
  • Know the patient’s treatment plan and which side effects may occur.
  • Keep a list of all medications, side effects and allergies.  This will come in handy for any doctor you are dealing with and it is also a critical reference should an emergency situation develop.

Ask for help.
Talk with family members and friends and discuss their availability.

Very often you may find one or two who are willing to become part of your ‘health team’. They may be able to help run errands or visit with the patient so that you can free up some time.

Even a brief respite will help.

Take care.
In order to be fully able to care for your loved one, you must first take care of yourself.

  • Try as much as you can to keep up with your own medical needs – doctor and dental appointments.
  • Eat properly and keep hydrated.
  • Be aware.  Most likely, you are feeling very stressed.  If you feel you are on overload, talk with a friend, spiritual advisor or social worker.  Because the role of caregiver is such a demanding one, very often online support groups or counseling may be an easier way to get the emotional help you need.

End of Life Support

Palliative Care.
Patients with serious illnesses require more than the specialized medical care initially sought. This is where palliative care is crucial. The focus of palliative care is to provide relief from the severe pains and stresses of the illness. Quality of life for both the patient and the family are the primary goal.

This means having a specialized team focusing on symptoms: pain, fatigue, difficulty breathing, digestive issues (nausea, constipation, diarrhea), anxiety and depression.

With palliative care, the patient’s doctors, nurses, and social workers are directly involved, as are massage therapists, acupuncturists and nutritionists. These professionals help you and your loved one mitigate the difficult and often frightening waves of this disease.

Hospice Care.
Discussion about hospice care usually will be initiated by your healthcare professional, but if you feel it needs to be broached – and hasn’t – the patient and their loved ones should bring up the topic. It is important for you to understand that considering hospice care is not anywhere close to “giving up.” It is simply a conversation to be sure that the patient and loved ones will receive the best care – and therefore ensure the best quality of life for the patient.

Provision of hospice care involves members from a number of sources:

  • Medical professionals such as primary care physicians and hospice nurses are specially trained to approach the needs of patients with a terminal illness.
  • Chaplains and spiritual counselors, to provide spiritual guidance and support
  • Oncology social workers, to provide emotional support and counseling as the patient confronts end-of-life issues.
  • Home-health aides, to provide assistance with everyday tasks such as bathing, dressing, eating.
  • Volunteers to help with tasks such as grocery shopping, trips to the pharmacy or household tasks.

Hospice care can be at the patient’s home, but there are other settings – nursing home, hospital or medical center – that have a specific department for hospice care. Services that the patient and family can expect from hospice care include: medication, medical supplies and equipment, emotional and spiritual support, respite care  (a break for the caregiver/family member), household tasks, and bereavement counseling.

Your medical professional team may refer you to a hospice provider, or you can search for hospice in your area at www.hospicedirectory.org or call 411 for further assistance.

Payment for hospice care is covered by most insurance plans. However some plans may have a per diem rate or a cap on how much will be covered. It is recommended that you check with the Medicare Hospice Benefit program and also that you check with www.hospicedirectory.org to find out if there is Medicaid-certified hospice care offered by your state. (Note: there is a difference between Medicare and Medicaid, see insurance tips).

Resource Links

These resources are regularly reviewed to ensure that links still work correctly and the resources listed continue to be helpful to our visitors. If you find that a link isn’t working or information is incorrect or you’d like to have your organization listed here, please email.

brain tumor quoteI am not afraid of storms for I am learning how to sail my ship.-Louisa May Alcott

Accelerate Brain Cancer Cure

202.419.3140

ABC2′ aggressively invests in bold and innovative research and drives collaboration to speed the development of new and effective treatments for brain cancer patients.
www.abc2.org

American Cancer Society

800.227.2345

ACS offers information about brain tumors, treatments, and managing life with the disease; a search tool helps locate support groups; ACS offers the Health Insurance Assistance Service.
www.cancer.org

American Society of Clinical Oncology/Cancer Net

888.651.3038

Cancer.net is a resource for direct and accurate information about cancer treatment based on the expertise of clinical oncologists.
www.cancer.net

CancerCare

800.813.4673

CancerCare provides free,  professional counseling and support groups to individuals, families, caregivers, and the bereaved. CancerCare’s Co· Payment Assistance Foundation, www.cancercarecopay.org
www.cancercare.org

Cancer Support Community

888.793.9355

CSC provides support, education and hope to all people affected by cancer, including personalized services at no cost.
www.cancersupportcommunity.org

CaringBridge

Offers personal, private, free websites to help keep your family and friends connected throughout your cancer journey.
www.caringbridge.org

Caring Connections

A program of the National Hospice and Palliative Care Organization (NHPCO), is a national consumer and community initiative to improve care at the end of life.
www.caringinfo.org

Family Caregiver Alliance

Provides support specifically for familial caregivers.
www.caregiver.org

National Caregivers Library

One of the largest single sources of information and tools for caregivers and seniors in the country.
www.caregiverslibrary.org

Partners In Health-Bikur Cholim

A multi-faceted medical and healthcare related agency dedicated to helping patients and their families receive the full complement of healthcare services.
www.bikurcholim.org/

The Healing Exchange Brain Trust

877.252.8480

T.H.E. Brain Trust runs online support groups and forums for discussion on all brain tumors for patients, providers, researchers, educators and caregivers.
www.braintrust.org

The National Family Caregivers Association

Educates, supports, empowers, and advocates for caregivers of loved ones with a chronic illness or disability.
www.thefamilycaregiver.org

Today’s Caregiver

The first national magazine dedicated to caregivers.

www.caregiver.com/

Visiting Nurses Association of America

Visiting Nurses Association of America helps patients and their caregivers find local Visiting Nurses Associations, which bring home healthcare to individuals in their respective communities.
www.vnaa.org/

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