Who We Are
Founded in 2011 by moms of children with chronic pain and complex medical conditions, The Coalition Against Pediatric Pain (TCAPP) is a 501(c)3 organization committed to supporting children and families coping with chronic pain. We advocate for families by raising awareness of the unique needs and challenges they face. Our organization, which is 100% volunteer run, provides validation, education, and support for children and families impacted by chronic pain or illness.
Since our inception, TCAPP has made a lot of progress, but there’s a lot more work to be done. We hope you will join us by committing to help these children and familes have the resources they need for a better quality of life.
To join our team, contact us at [email protected]
Our Mission
Support and Unite Families Affected by Pediatric Pain
- Create a Facebook and web forum that allows people to post concerns, information, and personal stories and interact with others wanting to share.
- Have a database of those interested in reaching out and supporting others.
- Through information gathered, be able to have and give others personal recommendations about what and who has worked with them in dealing with their personal family issues of chronic pain.
Educate Others Regarding Long-Term Consequences of Pediatric Pain
- Develop educational resources detailing the impact of chronic pediatric pain conditions on individuals across various age groups, emphasizing the persistent nature of these conditions and the long-term ramifications for patients and their families.
- Educate families, healthcare professionals, and educational institutes about the long-term emotional aspects of dealing with pain on a daily basis and not seeing an end to it and how best to support them.
- When appropriate, support legislative bills which make the lives easier of those suffering from chronic pain, through personal anecdotes, meetings, and letters.
Increase Awareness of Special Needs of Children Affected by Pediatric Pain
- Create a centralized web source to allow for easy access to disability laws for educational purposes from elementary school through post-graduate school.
- Create public media brochures describing pediatric pain conditions and awareness for schools, individuals, health care systems, etc.
- Serve as a central database to help others contact those that may be helpful in school advocacy positions, legal positions, state help positions, etc.
Fundraising for Organizations that Operate to Alleviate Pediatric Pain
- Create a research fund that will be donated to an organization and their particular research project or directly to researchers or institutions and programs that are researching, treating, or making a difference in alleviating pain disorders that affect kids. Final decisions on who will receive funding will be made through input from our medical advisory board and by final vote of all board members.
Provide Resources for and Funding to Families and Professionals Affected by Pediatric Pain
- Create an equipment/need/camp based fund with an allotted amount that can be given yearly to families for medical/equipment/emotional support (i.e. wheelchairs, trips to see doctors, specialized camps, programs etc.). An application will be created and interested individuals will submit an application. Final selection will be made by board members +/- advice from a board selected committee.
- Create a web based resource and central database of information for places that offer additional help with the above, with medical benefits, etc.
TCAPP Board Members
Our board includes parents, advocates, and professionals who are all dedicated to helping families of children with pediatric pain.
Sue Pinkham
President/Secretary
Sue Pinkham is a Mom whose daughter was diagnosed with CRPS/RSD in 2005 and Ehlers Danlos Syndrome in 2012. She has been involved in raising awareness of CRPS/RSD and chronic pain since 2008. Sue is one of the founding moms and the president of The Coalition Against Pediatric Pain. Her duties include presiding over board meetings, supporting children and families who live with pediatric pain conditions, fundraising, and working to fulfill the mission of TCAPP.
Mike Pinkham
Treasurer
Mike Pinkham is a Certified Public Accountant who received his Master of Science in Accounting from Suffold University in 2016. He has experience in tax and assurance and works with numerous non-profits, for-profit enterprises, and individuals. Having seen his cousing battle chronic pain for over a decade, Mike is committed to fulfilling the mission of TCAPP in any way he can. Mike serves as treasurer for TCAPP, where he is responsible for bookkeeping and compliance.
Jodi Pinkham
Board Member
Jodi has been part of TCAPP since day one as a teenager living in chronic pain. Jodi sends cards and Smiles to TCAPP kids, fundraises and organizes TCAPP’s Pediatric Pain Week at The Center for Courageous Kids. Jodi’s been living with chronic pain since the age of 14 and was eventually diagnosed with Ehlers Danlos Syndrome after searching for answers for many years. She is passionate about helping children who live with chronic pain and aiding them to make connections with others who understand what they are going through.
Lexi Uslu
Board Member
Lexi is a 24 year old who lives with many chronic illnesses. She was diagnosed as a child and now her mission in life is to help other children find happiness despite being chronically ill. Lexi loves to help and support families and kids going through the struggle of living in chronic pain and having chronic illnesses. Lexi is a writer and enjoys spending time with her cat and husband (as well as helping TCAPP). ** Lexi passed away on August 11, 2024 but her heart will always be with TCAPP **
Shelbi Gill
Board Member
Shelbi began volunteering with TCAPP in 2024, bringing her passion for advocacy and community building to children and families living with chronic pain. Diagnosed with Complex Regional Pain Syndrome (CRPS) as a teenager, she understands firsthand the challenges of navigating life with an invisible illness. She now supports TCAPP’s mission through fundraising and community engagement efforts and is deeply committed to ensuring that children and families affected by chronic pain feel seen, supported, and empowered.
Carolyn McNoldy
Board Member
Carolyn McNoldy has been involved with TCAPP for many years. She resides in Virginia with her two dachshunds. She has a Bachelor of Science in Administration of Justice, a Paralegal Certificate from George Mason University, and a Masters of
Paralegal Studies from George Washington University. She works full time as a paralegal in Fairfax, VA. Approximately 16 years ago she was diagnosed with Complex Regional Pain Syndrome (CRPS) after an elbow surgery. Carolyn has also been diagnosed with EDS, its comorbidities, and other medical conditions.
It was through a Young Adult Weekend she came to know Sue and Jodi Pinkham. She responded to Sue’s call for volunteers to attend the pediatric pain camp. Since then she has participated as a camp counselor for TCAPP for many years and recently joined the TCAPP Board. She recently started TCAPP’s very exciting “Happy Mail!” program.
She also volunteers for RSDSA by moderating the VA, MD, D.C. virtual support group and the RSDSA young adult virtual support group. She started and runs “Carolyn’s Cards” for RSDSA and moderates their Young Adult Weekend retreats held in various cities throughout the country. Carolyn’s goal is to provide, help, comfort, knowledge, smiles, and positive vibes to those with chronic pain.
Lisa Jones
Board Member
Lisa Jones resides in Northern Virginia with her husband and their four miniature dachshunds. She earned a Bachelor of Science in Biochemistry with a minor in Genetics from North Carolina State University, followed by a Master of Arts in Education from George Mason University. She also obtained licensure in Education Supervision and Leadership and a Paralegal Certificate from GMU. After careers in biochemistry, teaching, educational leadership, and as a paralegal, Lisa completed her doctorate in Education Leadership at GMU. In 2025, she published two books on Amazon.
Now retired, Lisa has recently come to understand that many of her lifelong symptoms are related to Ehlers-Danlos Syndrome and its comorbidities, along with several other chronic illnesses. She was introduced to Sue and Jodi Pinkham through her daughter Carolyn McNoldy, a chronic pain patient, and has since become actively involved with TCAPP. As a volunteer and now an enthusiastic Board member, Lisa hopes to support those living with pain by spreading positivity, knowledge, and offering encouragement through the “Happy Mail” program. She also plans to launch a TCAPP newsletter. She especially enjoyed the recent “Craft and Chat” events and looks forward to serving wherever she is needed – bringing smiles and comfort along the way!
Zoe Barron
Board Member
Zoe has been volunteering with TCAPP since 2023. She lives in Massachusetts and is currently in graduate school to become an occupational therapist. Zoe was diagnosed with CRPS in the seventh grade, and later with EDS, many of its comorbidities, and other chronic pain conditions. Her mission is to use her personal experience and education to support others in the clinical setting and beyond, especially those who feel dismissed or unheard. Zoe cares deeply about compassion, advocacy, and lending a listening ear so no one feels alone in their journey.
