The AMDA would like to initiate a Pompe Patient Mentoring program. The purpose of this new initiative is to find families willing to talk with other families that have a member newly diagnosed with Pompe disease.

Why should you be a mentor?

• To share experiences
• You have a drive to help other people newly diagnosed with Pompe disease
• Desire to educate both families and/or local physicians
• Personal fulfillment

What we hear from most families:

• Once a family member gets diagnosed with Pompe disease, they don’t know what to do next or who to turn too.
• They were not aware there was a patient organization for this disease
• They don’t understand or remember what their doctor has told them about the disease and/or treatment options available.
• They feel alone and scared
• They get too much information at once and can’t process it all

The mentoring program and goals:

• A system of networking families to provide support, and information
• Mentoring goals are aimed to bridge real and perceived gaps between families, medical professionals and service providers

Mentoring responsibilities:

• Establish and maintain family and other support contacts
• Provide pertinent information to families and professionals

Understanding your role as a mentor:

• You will be a peer counselor NOT a doctor
• You will provide the family with a road map of where to go from here
• You will try to provide an atmosphere of trust

What do you need to be a mentor?

• A desire to help other families
• The ability to really listen
• Ability to follow through
• The ability to not flood the new family with too much information at one time.

Road blocks to being an effective mentor:

• Emotions: Grief, fear, guilt, blame, and/or shame
• Lack of time: Family, career, or procrastination

What is the key to overcoming these road blocks?

• Education and inspiration!

Getting started as a mentor:

• Contact the AMDA
• Contact other mentors
• Gather resources (don’t reinvent the wheel)

How to match a mentor to a new family?

• What does the new family need?
• Consider the age of the patient
• Consider the comfort level of the new family

Types of Outreach:

• One-to-one family support
• Formal support organizations
• Informal support networks
• Educational opportunities for professionals

One-to-one family support:

• The basis of all outreach
• May be occasional
• Extremely informal: "Call me if you need…."

Informal organizations:

• Personal contact
• E-mail and telephone contact
• Listservs

Formal organizations:

• Patient organizations
• Events, conferences, patient information teleconferences

If you are interested in joining the AMDA Mentoring Program, please contact Marsha Zimmerman.

Information was obtained from the cleft advocate Pathfinder Program www.cleftadvocate.org) and was adapted for AMDA use.