TCAPP is a 501(c)3 Organization founded by 5 mothers of kids that suffer from chronic pain
diseases. All 5 have been affected by RSD/CRPS (a neuropathic pain disorder) and 4 have also been diagnosed with Ehlers Danlos Syndrome (a connective tissue disorder) and Dysautonomia (dysfunction of the autonomic nervous system). After spending years running into brick walls and learning how little is known about these diseases and pediatric pain in general, and, fighting to give their kids as normal of a life as possible, these mothers realized much had to change in the world of pediatric pain and adult pain. Therefore, TCAPP is an organization that welcomes all that were affected (even if they are now adults) by pediatric pain conditions and will, as a non-profit organization, strive to do the following:
Goal #1: 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.
Goal #2: Educate Others Regarding Long-Term Consequences of Pediatric Pain
Create material and information about chronic pediatric pain conditions and how many don’t go away and how pain continues to affect kids, families, young adults, and adults and the lifelong consequences of this. 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. Educate families, healthcare professionals and educational institutes about the physical changes caused by various chronic pain disease process and how this further complicates the physical health of the individual 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.
Goal #3: 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.
Goal#4: Fundraise 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.
Goal #5: 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.