Swallowing Support Groups

If you have dysphagia or are close to someone with a swallowing disorder, you don’t have to go it alone. A support group can help. (See list of active support groups below)

Support groups bring together people facing similar problems. 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 of 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. One of our first meetings consisted of 20 people, including 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 presentation and discussion, and then we split into smaller breakout sessions. Meetings were planned about 2 months in advance, held on a Saturday, and lasted 2.5 hours.

Feedback from patients with dysphagia who attended 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 that 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 three major initiatives for 2015 to build a nationwide network of support groups.

The following is a list of speech language pathologists who are welcoming those with swallowing disorders (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 finding out more about the group, please contact the group leader directly. There is no fee to attend a support group.

 

CaliforniaSan Diego

Liza Blumenfeld

Email: Blumenfeld.Liza@scrippshealth.org

Phone: (858) 626-5059

Meeting Location: Scripps Memorial Hospital, La Jolla Voice and Swallowing Center

Next meeting is scheduled; email Liza for the date and time

Website: http://www.scripps.org/

 

Louisiana – Ferriday

Marilyn Truly West

Email: Marilyn.West@GenesisHCC.com

Phone: (901) 258-9638

Meeting Location: Genesis Rehab, Heritage Manor Health and Rehab, Ferriday, LA

Meeting date and time to be determined based on patient interest

 

MissouriCape   Girardeau

Allison Remley

Email: Allison_Remley@lcca.com

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

 

OhioCleveland

Esther A. L. Verbovszky

Email: jojojoey@ameritech.net

Phone: (216) 320-2456

Meeting Location: Cleveland Feeding and Swallowing Center

Next meeting is scheduled; email Esther for the date and time

Website: www.clevelandswallowingcenter.org

 

New York – Brooklyn

Sharon Beaumont-Bowman

Email: sharonb@brooklyn.cuny.edu

 

PEDIATRIC SUPPORT GROUP

Phone: (718) 851-3300

Meeting Location: Challenge Early Intervention Center, 649 39th Street, Brooklyn, NY 11232

Meeting Time: 3rd Mondays of each month; 9:30am-11:30am

Note: this center generously provides the space, parents do not need to be affiliated with Challenge to attend the group.

Website: http://www.brooklyn.cuny.edu/

 

ADULT SUPPORT GROUP

Phone: (718) 951-5186

Meeting Location: 2900 Bedford Avenue, Brooklyn NY 11210

Meeting Time: Quarterly; email Sharon for the date and time

Website: http://www.brooklyn.cuny.edu/

 

New YorkBuffalo

Laura Roberts

Email: Laura at robertla@buffalostate.edu

Phone: (716) 878-5306

Meeting Location: Buffalo State College

Email Laura directly for the date and time of the next support group meeting

Website: Buffalo State Speech Language Pathology

 

New YorkRye

Kathy Kennard-MacKenzie

Email: kkmackenzie@theosborn.org

Phone: (914) 925-8274 or (914) 921-2200

Meeting Location: The Osborn Senior Living – 101 Theall Rd, Rye, NY 10580

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.

Meeting time: February-May & September-December; First Tuesday of the month from 4:00-5:30pm

Osborn Website: http://www.theosborn.org/

 

TexasHouston

Brad Smith

Email: bradgsmith@mdanderson.org

Phone: (713) 745-5820

Meeting Location:  MD Anderson Cancer Center; Charline and Red McCombs Institute, 7435 Fannin St, Houston, Tx 77054 (Conference Rm 1 & 2)

Please email Brad if interested in attending or for additional information. Meetng are being held monthly.

Website: www.mdanderson.org

 

Virginia – Harrisonburg and Shenandoah Valley

Christy Ludlow & Erin Kamarunas

Email: kamaruee@jmu.edu

Phone: (540) 564-7200

Meeting LocationRMH 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.

Website: RMH Healthcare

 

Washington – Seattle

Jan Pryor

Email: jpryor2@u.washington.edu (Jan)

Meeting Location:  UW Medical Center, 1959 NE Pacific Street, Seattle, WA 98195

Meetings held quarterly in March, June, September, and December; email for time and date

Website: www.uwmedicine.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

CaliforniaSacramento

ColoradoFort Collins

Florida – Orlando

Kentucky – Louisville

LouisianaSlidell

Oregon – Eugene

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.