If you have dysphagia or are close to someone with a swallowing disorder, you don’t have to go through it alone. A support group can help. (See list of active support groups below)
Support groups bring together people facing similar issues. Members of support groups often share experiences and advice. It can be helpful getting to talk with other people who are in the same boat. While not everyone wants or needs support beyond that offered by family, friends, and their medical team, you may find it helpful to turn to others outside your immediate circle. A dysphagia support group can help you cope better and feel less isolated as you make connections with others facing similar challenges. A support group shouldn’t replace your standard medical care, but it can provide hope and be a valuable additional resource.
The National Foundation of Swallowing Disorders (NFOSD) began its first dysphagia support group in 2010. The most recent meeting consisted of 20 people included dysphagia patients, caregivers, and a few students. It was co-lead by a Jan Pryor, a skilled speech language pathologist, and Sonia Blue, the former president of the NFOSD. The meeting kicked off with a group presentations and discussion and then split into smaller breakout sessions.
Dysphagia patient feedback from the meeting included:
- Feeling less lonely, isolated, anxious, depressed, or judged
- Gaining a sense of empowerment and control
- Being able to talk openly and honestly about one’s feelings
- Getting practical advice or information about treatment and coping options
- Comparing notes about resources, such as doctors and alternative options
In addition, feedback from caregivers was in some ways even more powerful. There was a deeper understanding of the struggles and challenges their loved ones and friends faced every hour of every day.
Based on the positive outcome of our support groups, the NFOSD has continued to make one of its major initiatives for 2015 to build out of a nationwide network of support groups. SLPs interested in beginning a support group may download a “Welcome Package” by clicking here to learn more about beginning a support group.
The following is a list of speech-language pathologists who are welcoming those with swallowing problems (along with family and friends) to join them in future support group meetings. Their email addresses are provided. If you are interested in attending a meeting or just finding out more about the group, please contact the group leader directly. There is no fee to attend a support group.
While our list of active support groups continues to grow, we recognize these groups cover only a small population of the country and the world. To respond to this, the NFOSD has launched two interactive online support group using Facebook. One group is designed for adults with dysphagia and the other is for parents and caregivers of children with feeding and swallowing disorders. These groups are designed to be a way to easily share your stories, resources, questions, answers, and support with others. We invite you to join us!
California – Sacramento
Lisa Evangelista, CScD, CCC-SLP, BCS-S
Meeting Location: University of California, Davis Medical Center, Department of Otolaryngology-Head & Neck Surgery 2521 Stockton Blvd 7th Floor Conference Room, Sacramento, CA 95817
Inaugural Meeting: March 26th, 2020 at 4-6pm
Please RSVP to Jennifer Mount (firstname.lastname@example.org)
Phone: (916) 734 – 1530
California – San Diego
Liza Blumenfeld, CCC-SLP, BCS-S
Phone: (858) 626-5059
Meeting Location: TBD
Next meeting is scheduled; email Liza for the date and time
Colorado – Denver
Katia Bruno, MEd, CCC-SLP
Shannon Heinrich, MS, CCC-SLP
Beth DalSanto, MSP, CCC-SLP
Meeting Location: Vibra Hospital, 8451 Pearl St., Thornton, CO 80229, Long Peak Conference Room
Meetings are scheduled quarterly on Fridays 5:00 – 6:30 pm. Please arrive 10 minutes early.
2020 Dates: 2/21/20, 5/15/20, 9/18/20, 12/11/20
Delaware – Lewes
Michele Poynton-Marsh, CCC-SLP
Meeting Location: 1632 Savannah Road, Suite 5
Meeting Date: 4th Thursday of every month from 2:00-3:00pm EST
Florida – Sarasota
Maggie Donaker, CCC-SLP
Meeting Location: First Presbyterian Church 2050 Oak Street Sarasota FL 34239
Meeting Dates: Feb 13, May 14, August 13 and November 12, 2020 (6:30 – 8pm EST)
Missouri – Cape Girardeau
Allison Remley, CCC-SLP
Phone: 573-335-2086 Ext 38
Meeting location: Life Care Centers of America at Cape Girardeau
365 S. Broadview; Cape Girardeau, MO 63701
Next meeting to be scheduled; email Allison for the date and time and to confirm location
New Jersey – Princeton (Effective 9/4/19)
Susan M. Pattay, CCC-SLP, BCS-S
Meeting location: Princeton, NJ 08542
Meetings will be held on the 1st Wednesday of the month, 4:30-5:30pm EST
Please email to register and receive details.
New York – Brooklyn
Sharon Beaumont-Bowman, CCC-SLP, BCS-S
Pediatric-Parents Meeting Location:
Challenge Early Intervention Center
649 39th Street, Brooklyn, NY 11232
Phone (718) 851-3300.
Meets third Monday of each month from 9:30 to 11:30 AM. Attendees need to confirm meeting date and time with Sharon as this could change.
Adult meeting location: Brooklyn College
2900 Bedford Avenue, Brooklyn NY 11210
Meetings are held quarterly; Fall, Winter, Spring, Summer. Please email to attend and be put on the mailing list.
New York – Rye (Currently Inactive)
Kathy Kennard-MacKenzie, CCC-SLP
Direct phone: (914) 925-8274
101 Theall Rd, Rye, NY 10580
Meeting Location: The Osborn Senior Living (Note, the Osborn has generously provided this meeting space, patients and caregivers do not need to be affiliated (past or current) with the Osborn to attend this swallowing support group meeting.)
Schedule: 8 times a year on the first Tuesday of the month from 4:00-5:30 pm from Sept to December, February to May. Please contact Kathy Kennard-MacKenzie (above) to register.
The Osborn website: http://www.theosborn.org/
Oklahoma – Tulsa
Tiffany Turner, CCC-SLP & Stacy Rathbone, CCC-SLP
Phone: (918) 928-4700
The Center – Classroom 1
815 S. Utica Ave.
Tulsa, OK 74104
Meets semi-annually; contact Tiffany Turner for meeting information
Oregon – Eugene
Samantha Shune, PhD, CCC-SLP
Phone: (541) 346-7494
1655 Alder Street (17th and Alder)
HEDCO Education Building (room to be announced)
Eugene, OR 97403
We meet every other month. Please contact Samantha for future meeting dates and times or for more information
Texas – Houston
Christine Porsche, MS, CCC-SLP, CLT
University of Texas MD Anderson Cancer Center
Please email Christine if interested in attending or for additional information. Meetings are being held monthly.
Virginia – Harrisonburg and Shenandoah Valley
Christy Ludlow, PhD, CCC-SLP & Erin Kamarunas, PhD, CCC-SLP
RMH Healthcare; Conference Room 1
2010 Health Campus Drive
Harrisonburg, VA 22801
Meetings are a collaborative effort between RMH Healthcare and James Madison University. They are scheduled for every other month on the second Wednesday of the month from 6:30 PM to 8:00 PM. Please call the number above for the date of the next meeting and to register to attend.
Washington – Seattle
Jan Pryor, CCC-SLP, BCS-S
UWMC Otolaryngology Clinic; 3rd Floor Waiting Room
1959 NE Pacific Street
Seattle, WA 98195
Meetings are held quarterly; Fall, Winter, Spring, Summer. Please email or call to attend and be put on the mailing list!
The following is a list of locations where speech language pathologists (SLPs) have expressed an interest in starting a support group. If you live near one of these areas and are interested in attending a support group, you can email us at email@example.com with your name, contact information, and location. We’ll pass this information onto the SLPs. When the SLP is ready to begin their support group, they will reach out to you with additional information.
California – Carmel
California – Encinitas
California – Sacramento
Colorado – Fort Collins
Florida – Orlando
Kentucky – Louisville
Louisiana – Slidell
New York- Buffalo
Utah – Salt Lake City
Wisconsin – Madison
Regardless of your location, if you are interested in being part of a support group, send us an email with your contact information and location. We have access to a nationwide network of speech language pathologists. If enough people are located in close proximity to each other, we’ll strive to establish a support group in your area. In addition, we are experimenting internally within our foundation with conducting online video chat support groups or allowing people to join into an existing support group over the Internet.
Lastly, if you are an SLP with an existing support group or have an interest in starting a dysphagia support group in your area, email us at firstname.lastname@example.org. We’d like to help you get the word out through the NFOSD website, Facebook, and other social media resources. Plus, we have flyers and other materials from prior support groups which can help you get your group started.