MENTORING PROGRAM
**Discovering that you or a family member has Pompe Disease can be a frightening time. People may become depressed, or have trouble coping with this news. Even after coming to terms with the news, many people may still feel alone–like no one else really understands what they are going through.
The Pompe Mentor Program provides people diagnosed with Pompe Disease the opportunity to connect with others to share experiences, stories, and resources related to Pompe Disease. This program allows direct contact by phone (text/call), email, or social networking with individuals who have experience dealing with the issues surrounding having Pompe Disease. These individuals will be able to problem-solve for newly diagnosed patients when they have questions and concerns that they cannot handle.
Pompe Patient Mentors can also support and have a positive impact on people newly diagnosed with Pompe Disease. Sharing their experiences can help them to empower others to advocate for themselves and provides positive reinforcement. A person that has been diagnosed with Pompe Disease will have many questions and several concerns that need to be addressed. However, a Mentor is NOT a physician or medical professional and will only offer advice. They will NOT prescribe any specific courses of action—patients and their families should ALWAYS consult with a medical professional on courses of treatment.
If you are interested in talking to someone, or if you want to be involved in our Mentoring/Connecting Program, please contact Morgan Burroughs at morgan.burroughs@amda-pompe.org
We have patients or family members ready and willing to talk to you. You don’t have to feel alone.
** The Mentorship Program is the result of the tireless efforts of Lucas Garrett, Morgan Burroughs, and Marsha Zimmerman. **