Swallowing Support Groups

If you have dysphagia or are close to someone with a swallowing issue, 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 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 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. They were planned about 2 months in advance, held on a Saturday, and lasted 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 friend’s faced every hour of every day.

Based on the positive outcome of our support groups, the NFOSD has made one of its three major initiatives for 2013 the 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.

 

California – Encinitas

Lisa Udwin, MA CCC-SLP

Email: Lisa at speechandswallowtherapy@gmail.com

(760) 815-8101

Meeting Location:

-  Lisa Udwin Dysphagia & Communication Services

-  700 Garden View Ct., Ste 201A,Encinitas,CA 92024

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

www.speechandswallowtherapy.com

 

CaliforniaSan Diego

Liza Blumenfeld, MA CCC-SLP, BRS-S

Blumenfeld.Liza@scrippshealth.org

(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, MA, CCC-SLP, AAC Specialist

Marilyn.West@GenesisHCC.com

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, M.S., CCC-SLP (Speech Language Pathologist)

Email: Allison_Remley@lcca.com

Phone: 573-335-2086 Ext 38

Meeting location: Life Care Centers of America at Cape Girardeau

Address: 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, MA CCC-SLP

Vital Stim and NOMAS certified; working on BRS-S

Cleveland Feeding and Swallowing Center

216-320-2456

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, SLP.D,CCC, BRS-S

Brooklyn College

718-951-5186

sharonb@brooklyn.cuny.edu

Meeting Location: Challenge Early Intervention Center – 649 39th Street, Brooklyn, NY 11232; Phone (718) 851-3300 (Note, this center generously provides the space, parents do not need to be affiliated with Challenge to attend the group.)

Meeting schedule: Generally meets on the third Monday of each month from 9:30 to 11:30 AM. It is important to confirm meeting date and time with Sharon as this could change. For example, the third Monday in January 2013 is a holiday. As such, the meeting has been moved to the fourth Monday in January.

Important: This swallowing support group is focused on parents who are caring for a young child with a swallowing disorder. Sharon is considering starting a group focused on the adult dysphagia patient. If you fall into the “adult” category, please email or call Sharon and let her know of your interest.

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

 

New YorkBuffalo

Laura Roberts, MS., CCC-SLP; BRS-S

Email: Laura at robertla@buffalostate.edu

(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) 522-1562

The Osborn

Meeting Location: The Osborn Senior Living – 101 Theall Rd, Rye, NY 10580; Phone (914) 921-2200. (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 schedule: The initial meeting is in the planning stages as of August 2014. Please email Kathy Kennard-MacKenzie for specifics on the first meeting date and time.

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

 

TexasHouston

Brad Smith, MS, CCC-SLP (Speech Language Pathologist)

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, Ph.D., Professor; Erin Kamarunas, Ph.D., CCC-SLP

Email: Erin Kamarunas

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, MA CCC-SLP,BRS-S

jpryor2@u.washington.edu

Yumi Sumida, MFA MS CCC-SLP

yas2@u.washington.edu

Speech Pathology Clinical Specialist

Voice and Swallowing Specialty Clinic

Harborview Medical Center

Meeting date and time to be determined based on patient interest

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

CaliforniaSacramento

ColoradoFort Collins

Kentucky – Louisville

LouisianaSlidell

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.