Pompe Allies

Role of a Pompe Ally

As a Pompe Ally mentor, you can use your experience to offer one-on-one support to someone experiencing Pompe, either as a patient or a caregiver. You will be able to offer unique comfort and reassurance by allowing current patients and caregivers to express their feelings, share their fears, and ask questions in a confidential and trustworthy environment.

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Mentors take on many roles, but being a listener is most important. If you think back to your experience, perhaps you needed someone to speak with during difficult times. You may have needed emotional support or information about the road ahead from someone who had similar experiences.

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Mentoring can be a rewarding, yet challenging experience. Helping someone else deal with Pompe may remind you of difficult times during your own experience or you may feel the person you are mentoring is not receptive to your comments. We’ll give you some helpful tools to handle these situations.

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The person you are mentoring wants to talk to someone who has been there or they would not have contacted the Pompe Allies Program. However, what they want to talk about or how much personal information they choose to share differs by individual. Your mentee might want encouragement or inspiration or might have a specific concern that they don’t feel comfortable talking about with family or friends. Or they may need pointers from you on what to expect and how to deal with the issues they face.

Answering medical questions is not a part of your role as a mentor. 

If your mentee asks for advice about treatments, doctors or medications, encourage them to contact their general practitioner or specialist.

Pompe Ally Mentor Criteria

• In order to be a patient mentor, you should be one year or more post-active treatment. This time frame also allows you to have recovered from the stresses of treatment and to meet the demands of being a mentor.

• Prior to beginning a mentoring relationship with a patient or caregiver, complete the Pompe Ally mentor training and become familiar with this manual.

• Possess a positive outlook and supportive nature.

• While flexible, being a Pompe Ally mentor to an individual may require a regular, ongoing commitment of time.

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• Pompe Allies is open to caregivers as well. Caregivers should be one year post diagnosis of their loved one.

• If you are unavailable for an extended period of time please contact a Pompe Allies Program coordinator so that you are not contacted for a match during that time. In addition, please contact a program coordinator with any changes in contact information or changes in your/you loved one’s health status.

• Provide feedback: Once you have made initial contact and spoken with your mentee, we ask that you send us a feedback form to let us know how the match went and any additional suggestions, questions or comments you may have for improving the program.