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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!

2024 UOAA Advocacy Goals and Priorities

Our Advocacy Program

United Ostomy Associations of America, Inc. (UOAA) is the leading organization proactively advocating on behalf of all people living with an ostomy or continent diversion in the United States.

One form of advocacy that people may be familiar with is that of professional “patient advocates”. These advocates provide individualized services such as navigating the complex healthcare system including quality of care complaints, assisting patients with making difficult medical decisions, and helping with medical bills and insurance denials/appeals. UOAA is unable to be a personal “patient advocate” for each person with an issue.

However, when we say we “advocate for people who have had ostomy surgery” we accomplish this on a large-scale as the voice of our community through our Advocacy Agenda. This 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

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*

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 by sharing information and resources for individuals to self-advocate.
* UOAA does not offer legal advice nor does it provide legal services.

Dispel

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.

Read More About Our Agenda

Meet The Committee:

Jeanine Gleba

Advocacy Manager

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 her Masters degree in Education and over 18 years of experience of grassroots organizing including partnering groups to achieve a common goal and raising awareness for a cause. 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. She is an award-winning advocate most recently being honored as the recipient of UOAA’s President Award in 2023. She is also the author of the book Making Her Point Loud and Clear - The Story of a Warrior Mom on a Mission and 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 the Digestive Disease National Coalition as Chairperson, and the NJ Audiology and Speech-Language Pathology Advisory Committee as a Public Member. 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

Co-Chairperson

Susan Mueller, BSN a recently retired WOC nurse was an RN for many years and 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. She became a WOC nurse in 2008 and participated as a member of the WOCN Certification Board Evidence Based Practice Committee, in an industry ostomy focus group and as a WOC nurse preceptor. She has presented on topics of ostomy education and fistula management at local and regional conferences. Sue is a colostomate since 2004 and was very active in the Ostomy Association of Albuquerque before moving to North Carolina for retirement.

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”. Sue has been appointed as the Co-Chairperson for UOAA’s Advocacy Committee.

Joanna Burgess-Stocks

Co-Chairperson

Joanna Burgess, BSN, RN, CWOCN is a full scope practicing Wound Ostomy Continence Nurse (WOCN) working for Convatec as a clinical specialty nurse. Joanna‘s contributions to WOC nursing include serving three years on the WOCN Society national ostomy committee where she helped in developing the "Pediatric Ostomy Complications: Best Practice for Clinicians". Her passion for ostomy care stems from her 56-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, national and international level. She was named the 2016 WOCN of the year for the southeast region of the United States. Joanna served on the board of UOAA for three years and was appointed co-chairperson for UOAA’s Advocacy Committee in 2020.

Keagan Lynggard-Hysell

Member

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.

Joy Hooper

Member

Joy Hooper, RN, BSN, CWOCN, OMS, WCC has been passionate about ostomy care and education since she first observed a patient undergo ileostomy surgery in 1998. Joy jumped in and became board certified as a Wound, Ostomy and Continence Nurse in 2002. Soon after entering the field, Joy created an ostomy teaching tool to help explain the complexities of ostomy surgery, The Anatomical Apron, which is sold all over the world. She was instrumental in forming a UOAA Affiliated Support Group in South Georgia. Realizing that there were no local ostomy clinics to serve the community, Joy then started a small ostomy education clinic in Tifton, GA. Joy is a clinical instructor for Relias Wound Care in Ostomy Management and Wound Care certification courses. She is proud to train and certify nurses around the country as Ostomy Management Specialists as a means of helping more ostomy patients. Joy was also extremely proud to be the recipient of the UOAA WOCN OF THE YEAR award for 2019.

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