Every Voice Counts. And Every Person Living With An Ostomy Should Be Heard.

Advocacy is promoting what is important to you and persuading others to support your cause. The most convincing advocate for UOAA is the individual who can talk about a personal experience with their ostomy surgery. No one knows better than you what living with an ostomy is like. You can make a real impact on decision-makers and together we can drive change. Go to our Action Center for ways that you can get involved at the grassroots level.

Because None Of Us Is As Loud As All Of Us!

Our 2018 Advocacy Agenda

United Ostomy Associations of America, Inc. (UOAA) is the leading organization proactively advocating for people living with an ostomy or continent diversion. Our Advocacy Agenda is grounded in the core values that form UOAA’s vision: A society where people with ostomies or continent diversions are universally accepted and supported socially, economically, medically, and psychologically.

To this end, UOAA strives to:


Ensure public and private health insurance options, including those under the Affordable Care Act, Medicare, Children’s Health Programs, and Medicaid, provide affordable coverage and access to high quality healthcare services, technology, and products to meet the needs of people living with an ostomy or continent diversion so that they may participate fully in society.


Protect the rights of people with an ostomy or continent diversion and eliminate discrimination at school, work, and elsewhere in their lives to ensure they are accepted as normal, healthy individuals.


Dispel the fear about undergoing this life-saving and life-restoring surgery and erase the myths, stigma and embarrassment that are sometimes associated with having an ostomy.

Meet The Committee:

Jeanine Gleba


As UOAA’s Advocacy Manager, Jeanine Gleba raises awareness and advocates for those who have had or who will have ostomy or continent diversion surgery. Jeanine has over 12 years of experience of grassroots organizing including partnering groups to achieve a common goal and raising awareness for a cause, which she is using to build on UOAA’s previous 10 years of advocacy work. Before joining UOAA, Jeanine was the driving force behind the successful passage of a New Jersey law named for her daughter Grace, which benefits thousands of NJ children who have hearing loss. In recognition of her advocacy efforts she has been awarded the following: 2014 Hear Strong Ambassador; 2013 National Alexander Graham Bell Association Presidential Award of Distinction, and 2009 NJ Speech Language Hearing Association Presidential Award. She is also the author of the Ebook: Warrior Mom’s Guide to Passing a Law. Jeanine believes in giving back to her community and has served in numerous roles including as an elected official: Deputy Mayor/Councilwoman for six years. She currently serves on her library’s Board of Trustees. Jeanine is passionate about inspiring others to self-advocate and make a positive change in their own lives, as well as in the lives of others.

Susan Mueller


Susan Mueller, BSN, RN, CWOCN, has been an RN for many years and has worked as a nurse and nurse case manager in a wide variety of health care settings with a focus on advocating for people with chronic illness and disability. Since becoming a WOCN in 2008 she has participated as a member of the WOCN Certification Board Evidence Based Practice Committee, in an industry ostomy focus group and as a WOCN preceptor. She has presented on topics of ostomy education and fistula management at local and regional conferences. Sue is a colostomate since 2004 and has been very active in the Ostomy Association of Albuquerque.

She has served on the Independent Living Resource Center Board of Directors and presented at disability workshops speaking on “Coping with Chronic Illness” and” How To Get The Most From Your MD Visit”. She believes strongly in the support of self-efficacy, self- advocacy and being what she calls an “educated health care consumer”.

Anita Prinz


Anita Prinz, RN, MSN, CWOCN has been a nurse for 22 years. She became certified as a WOC Nurse in 2001, and obtained a Master’s degree in Nursing in 2009. Anita has served on the National WOCN ostomy committee and co-authored the Best Practice Guideline for Ostomy Discharge Planning. She has written many articles for The Phoenix, presented posters, and published articles on ostomy management and social networking. Anita has worked in many areas of nursing but has always been most passionate about home care. In 2008 she created a private Facebook group for WOC Nurses in Home Care to network. Since that time, she has become a member of many of the private ostomy groups on Facebook and last year did an oral presentation on her poster titled “A study of the Facebook Phenomenon and the Ostomy Community”. She currently works in Utilization Review for MyNexus, reviewing and authorizing home health skilled nursing services for patients with wound and ostomy needs.

In addition, Anita served on the board of the NY State Nurses Association Legislative committee and worked alongside Diana Mason in the 1990’s. She has rallied in Austin, TX for safe nurse staffing and was a NIMBY activist against the expansion of a landfill in her community in Pearland, TX. She now resides in Boynton Beach, Florida.

Joanna Burgess-Stocks


Joanna Burgess, BSN, RN, CWOCN is a full scope practicing Wound Ostomy Continence Nurse (WOCN) working for WakeMed Health and Hospitals in Cary, North Carolina where she facilitated the opening of their first outpatient ostomy clinic. Joanna‘s contributions to WOC nursing include serving three years on the WOCN national ostomy committee where she helped in developing the "Pediatric Ostomy Complications: Best Practice for Clinicians". Her passion for ostomy care stems from her 51-year journey of living with an ostomy since the age of three. Joanna was the 2011 National Great Comebacks recipient and has shared her story on a state and national level. She was named the 2016 WOCN of the year for the southeast region of the United States, and is honored to serve on the board for United Ostomy Associations of America. Joanna has been appointed as the Chairperson for UOAA’s Advocacy Committee.

Heather Brigstock


Heather Brigstock received a permanent ileostomy in 2001 following a four-year battle with severe Crohn’s Disease. In 2003, she had her first baby as an ostomate. A second baby followed in 2007, shortly after she graduated from nursing school. Since nursing school, Heather has been a guest lecturer, teaching ostomy care to registered nursing students. Through teaching new nurses, Heather strives to erase the stigma associated with ostomies, and deliver a perspective that is through the eyes of a patient as well as a nurse. After several years working nights as a nurse, she suffered a severe relapse of her disease that resulted in more surgeries, months in the hospital, and three years of IV nutrition. Taking a step back from her career allowed her to re-evaluate her focus within nursing. She returned to school and finished her Masters of Science in Nursing with a focus on Clinical Nurse Leadership at the University of San Francisco in 2016, then completed the wound/ostomy certification program at San Jose State University also in 2016. She focused her graduate studies on improving access to care for ostomy patients and created a new patient workshop called Stoma Smart to help ostomates in her county access resources and receive increased educational support. She currently guest lectures in the wound/ostomy certification program at San Jose State University and in the registered nursing program at Santa Rosa Junior College. Heather is now also starting to blog about life with an ostomy. In her spare time, she visits with new ostomates and is active within her local UOAA group.

Keagan Lynggard


After years of misdiagnoses and worsening symptoms, Keagan was diagnosed with Crohn’s Disease at the age of 15. Just two short weeks after her diagnosis Keagan underwent her first ostomy surgery and within that first year underwent a total of 7 major surgeries, 5 of which resulted in an ostomy. Keagan admits to suffering in silence for years due to the overwhelming sense of isolation and her insecurities of living with an ostomy. Reflecting on both the physical and psychosocial struggles she faced as a new ostomate, Keagan was inspired to raise awareness through education and personal testimony. She began advocating for herself and others through volunteer opportunities with the Crohn‘s and Colitis Foundation and United Ostomy Associations of America. While consulting for a major ostomy manufacturer, Keagan was able to travel throughout the United States speaking to healthcare professionals on the importance of pre/post-surgical education for persons living with an ostomy. These days Keagan is a student finishing up her undergraduate studies and working towards medical school. When she is not studying, Keagan spends her free time as a hospital volunteer working closely and providing support to new ostomy patients. No longer silenced by insecurities, Keagan’s mantra "Speaking up and raising awareness for those silenced by the stigma" keeps her dedicated to serving the ostomy community.

Thank You For Your Interest In UOAA Advocacy Efforts

Please contact us to let us know the issues that are important to you at 1-800-826-0826 or email our Advocacy Manager at advocacy@ostomy.org. You can also follow our advocacy efforts on Twitter @UOAA_Advocate.

Advocates for a Positive Change