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!
Adult Online Swallowing Support Group
Pediatric Online Swallowing Support Group
Click Here to See a List of Support Group Topics
Please note that many in-person groups are on hold due to the pandemic. Some groups are offering a virtual option. We recommend reaching out to the moderator for more details.
UNITED STATES:
Arizona – Virtual
Malathy Venkatesh, PhD, CCC-SLP and Kathryn Hammond, MS, CCC -SLP
Meeting Location: Virtual via Zoom
Meeting Date: March 3, 2022 at 6:00 -7:00 pm MST (inaugural meeting)
Contact: SSGArizona@yahoo.com
Email for future dates/times
California – Los Angeles
Shannon Crow, MS, CCC-SLP and Lily Schneiderman, MS, CCC-SLP, CBIS
Meeting Location: Virtual via Zoom
Meeting Date: 2nd Tuesday of each even numbered month
2022: February 8th, April 12th, June 14th, August 9th, October 11th, December 13th
Time: 6:00-7:00 pm (PST)
Contact: LADSGroupCA@gmail.com
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
Please RSVP to Jennifer Mount (jjmount@ucdavis.edu)
Phone: (916) 734 – 1530
California – San Diego
Liza Blumenfeld, CCC-SLP, BCS-S
Liza@endo-education.com
Phone: (858) 626-5059
Meeting Location: TBD
Next meeting is scheduled; email Liza for the date and time
California – San Francisco
Claire Heitinger, MS CCC-SLP
Website: https://www.dysfogia.com/
Please note: this is a resource page and not a support group; Claire can help connect you to local swallowing support resources. Claire hopes to start a support group in the future.
Colorado – Denver
Katia Bruno, MEd, CCC-SLP, BCS-S
Shannon Heinrich, MS, CCC-SLP
Beth DalSanto, MSP, CCC-SLP
Email: brunoekaterina@yahoo.com
Meeting Location: Virtual, please email for link
Time: 5:00 – 6:30 pm.
2022 Dates: 2/11, 5/13, 9/9, 11/11
Delaware – Lewes
Michele Poynton-Marsh, CCC-SLP
Email: voice@mpmspeech.com
Phone: 302-644-1220
Meeting Location: 1632 Savannah Road, Suite 5
Lewes, DE
Meeting Date: 4th Thursday of every month from 2:00-3:00pm EST
Florida – (Virtual, Open to any Florida residents)
Dysphagia Digest of Florida: Maggie Donaker, MS, CCC-SLP & Kristin Winter, M.Ed., CCC-SLP
Email: info@dysphagiadigest.com
Website: https://www.dysphagiadigest.com
Facebook Site: https://www.facebook.com/DysphagiaDigest/
Meeting Location: Virtual (email for details)
Date: Email for schedule
Illinois – Chicago
Abigail Nellis, CCC-SLP
Email: abigail.day@
Meeting: Email for date/time, currently meetings are virtual and open to anyone in the United States.
Missouri – Cape Girardeau
Allison Remley, CCC-SLP
Email: aremley@sehealth.org
Meetings: Currently on hold
New Jersey – Princeton
Susan M. Pattay, CCC-SLP, BCS-S
Email: susan.pattay@pennmedicine.upenn.edu
Meeting location: Princeton Medical Center in the Edward and Marie Matthews Center for Care- Conference Room
One Plainsboro Road, Plainsboro, NJ 08536
Meetings will be held on the 3rd Wednesday of the month, 12:00-3:30 pm EST
Registration preferred. Walk-ins welcome.
New York – Brooklyn
Sharon Beaumont-Bowman, CCC-SLP, BCS-S
Phone: 718-951-5186
Email: sharonb@brooklyn.cuny.edu
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 should 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.
North Carolina – Charlotte
Michelle Hill, CCC-SLP
Email: SSGCarolinas@gmail.com
Currently meets virtually; email to RSVP and for more details.
North Carolina – Durham/Raleigh
Nancy Villejo-Smith, CCC-SLP
Email: SSGCarolinas@gmail.com
Currently meets virtually; email to RSVP and for more details.
Oklahoma – Tulsa
Tiffany Turner, CCC-SLP & Stacy Rathbone, CCC-SLP
Email: therapy@tulsasnr.com
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
Email: sshune@uoregon.edu
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
Email: ceporsch@mdanderson.org
Phone: 713-745-5846
University of Texas MD Anderson Cancer Center
Please email Christine if interested in attending or for additional information. Meetings are being held monthly.
Texas – San Antonio
Alexandria Gawlik, CCC-SLP
Email: Alexandria.e.gawlik.civ@mail.mil
Phone: 210-539-7262
UT Health San Antonio School of Dentistry, Speech Pathology Classroom
7703 Floyd Curl Drive, San Antonio, Texas 78229
Schedule – TBD. Please email for details.
Texas – Tyler
Email: meaghan@ssnrtx.com
Phone: 903-871-5712
1101 E Southeast Loop 323, Suite 175
Tyler, TX 75701
Schedule – First Tuesday of every month from 4pm-5 pm (email for meeting confirmation)
Virginia – Harrisonburg and Shenandoah Valley
Christy Ludlow, PhD, CCC-SLP & Erin Kamarunas, PhD, CCC-SLP
Email: kamaruee@jmu.edu
Phone: 540-564-7200
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 and Angelina Fitzgerald, CCC-SLP
Phone: 619-339-5491
UWMC Otolaryngology Clinic; 3rd Floor Waiting Room
1959 NE Pacific Street
Seattle, WA 98195
Meetings are held the second Thursday of each month. Please email or call to attend and be put on the mailing list!
CANADA:
Country-Wide Virtual Support Group:
Zuleikha Wadhwaniya, MS, SLP(C), Reg. CASLPO and Ashwini Namasivayam-MacDonald, PhD, SLP(C), Reg. CASLPO
Email: Zuleikha.Wadhwaniya@uhn.ca, namasia@mcmaster.ca
Website: https://tinyurl.com/dysphagiasupportgroup
Date/Time of Meetings: Wednesday, May 25 at 7:00 pm EST (inaugural meeting)
Virtual: Email for link
Details: While this free support group is not a replacement for medical or psychological advice, it can be a valuable resource to help your adult patients and their caregivers make connections with others facing similar challenges.
Requirements for participation:
Must be an adult with swallowing disorder or the caregiver of an adult with a swallowing disorder
Must reside within the Canada
Must have access to a computer/tablet/phone with high-speed internet with a microphone and webcam
Must be available for the entirety of the 60-minute session
Alberta – Canada: https://head-way.org/
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 info@nfosd.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
Colorado – Fort Collins
Florida – Orlando
Kentucky – Louisville
Louisiana – Slidell
Louisiana – Youngsville
New York- Buffalo
North Carolina – Durham/Concord/Charlotte
Ohio – Cleveland
Pennsylvania – Pittsburgh
Pennsylvania – Philadelphia/South Jersey
Texas – Tyler
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 info@nfosd.com. 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.