The PC Advocate Program was based on the premise that each PC patient has a powerful story to tell about their lives with PC and can use it in a way to educate multiple audiences including other PC patients, scientists, doctors, and people who have never heard about PC.
PC Advocates have joined the International Pachyonychia Congenita Research Registry, participate in all they can, and are examples and leaders inside and outside of the global PC community.
Become an Advocate
Let us know you are interested in being an advocate. The following training material was developed to help PCers learn how to advocate. Please review at your convience.
- PC Advocates – Training Session 1
- PC Advocates – Training Session 2 Understanding PC
- PC Advocates – Training Session 2 Understanding PC Project
- PC Advocates – Training Session 3 Telling Your Story
- PC Advocates – Training Session 4 Preparing For Action
- PC Advocates – Training Session 5 Workbook
- PC Advocates – Training Session 5 Grand Rounds Sample Book
PC Advocates completed the above training and met with doctors, scientists and industry professionals to understand all forms of PC and be able to effectively communicate with patients, physicians and others. They also had time to come together as a team to continue working towards a cure for PC. Some of the advocates had a special opportunity to attend the IPCC symposium after the advocate training. Here is one advocates thoughts after the meeting.
The collaboration of these researchers and physicians was impressive. They are all putting in significant time and effort to find a cure for PC… After spending 3 days in these meetings, I left inspired to continue doing my part to help PC Project find a cure. My part is to continue raising awareness for PC, do fundraising to help support PC Project, support research, and participate and update my daughter’s IPCRR information. These are things every PC patient and family can do. If we continue to work as a team PC Project will continue to do great things!
Christine
PC ADVOCATES USA
Julianne Bennett
Tennessee
PCer and parent of PCer
Christine Block
Wisconsin
Parent of PCer
Albert Bravo
Massachusetts
PCer and parent of PCer; Podiatrist
Roseann McGrath
Pennsylvania
PCer
Lisa Alvarado
New Jersey
PCer and parent of PCer
Stephen Wittmer
Minnesota
PCer and parent of PCer
James Rittle
Illinois
PCer and parent of PCer
PC ADVOCATES EU
Tom Baker
Wales UK
PCer and parent of PCer
Paolo Cognetti
Italy
PCer
Philip Gard
England UK
PCer and parent of PCer
Melanie Hettler
Germany
PCer
Pamela Ibáñez Triguero
Spain
PCer
Katri-Anna Lehto
Finland
PCer and parent of PCer
Julie Peconi
Wales UK
Wife and parent of PCer
Sylvie Potier
France
PCer and parent of PCer
Kathryn Fairbrother
England UK
PCer
.
Becoming an advocate is about using your voice to make a difference. The PC Advocate training taught me the power of using my voice to self-advocate on behalf of myself and other people with PC. I learned how to speak in factual terms about PC, how to get and evaluate information, find out who will support me in my journey, know my rights and responsibilities, problem solve, listen and learn, reaching out to others when I need help and friendship, and learn about self-determination.
Jack
