Swallowing Support Groups

If you have dysphagia or are close to someone with a swallowing issue, 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 just 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.  Meetings are planned about 2 months in advance, held on a Saturday, and last about 2.5 hours.

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.

The following is a list of speech language pathologists who are welcoming those with swallowing issues (along with family and friends) to join them in future support group meetings. Their email address is 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.

 

CaliforniaSan Diego

Liza Blumenfeld

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

http://www.scripps.org/

 

Louisiana – Ferriday

Marilyn Truly West

Email: Marilyn.West@GenesisHCC.com

Phone: 901-258-9638

Genesis Rehab; Heritage Manor Health and Rehab

Ferriday, LA

Meeting Location: Heritage Manor Health and Rehab

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

Cleveland Feeding and Swallowing Center

Phone: 216-320-2456

Email: jojojoey@ameritech.net

Meeting Location: Cleveland Feeding and Swallowing Clinic

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

www.clevelandswallowingcenter.org

 

New YorkBrooklyn

Sharon Beaumont-Bowman

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.

 

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

Buffalo State Speech Language Pathology

 

New YorkRye

Kathy Kennard-MacKenzie, MA, CCC/SLP

Email: kkmackenzie@theosborn.org

Direct phone: (914) 925-8274

The Osborn

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/

 

TexasHouston

Brad Smith

Email: bradgsmith@mdanderson.org

Phone: 713-745-5820

University of Texas MD Anderson Cancer Center

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

www.mdanderson.org

 

Virginia – Harrisonburg and Shenandoah Valley

Christy Ludlow & Erin Kamarunas

Email: kamaruee@jmu.edu

Phone: 540-564-7200

Meeting Location:

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

jpryor2@uw.edu

Phone: 206-598-1283

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!

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

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.