Swallowing Support Groups

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:

CaliforniaLos 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

2021: Dec 14th

2022: February 8th, April 12th, June 14th, August 9th, October 11th, December 13th

Time: 6:00-7:00 pm (PST)

Contact: LADSGroupCA@gmail.com

CaliforniaSacramento

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 (jjmount@ucdavis.edu)

Phone: (916) 734 – 1530

CaliforniaSan 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

CaliforniaSan 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 hope to start a support group in the future.

Colorado – Denver

Katia Bruno, MEd, CCC-SLP

Shannon Heinrich, MS, CCC-SLP

Beth DalSanto, MSP, CCC-SLP

Email: brunoekaterina@yahoo.com

Meeting Location: Vibra Hospital, 8451 Pearl St., Thornton, CO 80229, Long Peak Conference Room

Tine: 5:00 – 6:30 pm.

2021 Dates: 2/12*, 5/14, 9/10, 11/12

*This meeting will be held virtually.

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)

Dates: January 21 | February 18 | March 18 | April 22 | May 20 | June 17 | July 22 | August 19 | September 16 | October 21 | November 18 | December 16

Thursdays 6:30-8:00PM via ZOOM

Illinois – Chicago

Abigail Nellis, CCC-SLP

Email: abigail.day@northwestern.edu

Meeting: Email for date/time, currently meetings are virtual and open to anyone in the United States.

MissouriCape   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 YorkBrooklyn

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 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.

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

TexasHouston

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.

www.mdanderson.org

TexasSan 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.

TexasTyler

Meaghan Arnold, CCC-SLP

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 (for 2021: 7/6, 8/3, 9/7, 10/5, 11/2, 12/7)

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.

RMH Healthcare

Washington – Seattle

Jan Pryor, CCC-SLP, BCS-S and Angelina Fitzgerald, CCC-SLP

jpryor2@uw.edu

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!

www.uwmedicine.org

CANADA:

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.

CaliforniaCarmel

California – Encinitas

ColoradoFort Collins

Florida – Orlando

Kentucky – Louisville

LouisianaSlidell

LouisianaYoungsville

New York- Buffalo

North Carolina – Durham/Concord/Charlotte

Ohio – Cleveland

Pennsylvania – Pittsburgh

Pennsylvania – Philadelphia/South Jersey

Texas – Tyler

UtahSalt   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.