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33 Reviews
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October 18, 2013

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October 18, 2013

My husband passed away of amyloidosis in 2004. At that time, not much was known about amyloidosis. I know it is not unusual today to hear the same about amyloidosis, but with Amyloidosis Support Groups networking with hospitals in the field of amyloidosis, having support groups in hospitals, holding conferences, having an on line group for patients and caregivers, booths at medical conferences, those with amyloidosis are no longer alone. I volunteer with the Ohio & Michigan Amyloidosis Support Groups and seeing the patients, families and caregivers interacting together about their symptoms & treatments is heart warming. Otherwise, they would have no one who has walked their walk or would know no one who had this rare disease.

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Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

September 5, 2013

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September 5, 2013

Muriel asked me to be her Pacific Northwest Amyloidosis Support Group Co-Facilitator back in 2006. We started with one meeting a year in Portland, grew to two, and now a meeting in Seattle for a total of three yearly meetings. In my opinion, the meetings are professionally run and filled with good medical information. We always have a guest doctor who is an expert in Amyloidosis along with local doctors and other medical staff attending. The LLS joins us to provide medical and financial information as well as lunch for patients. Every meeting we have new people attending as well as regulars who provide helpful tips. I believe we have saved lives by providing the latest medical information available. I contracted AL Amyloidosis in 2002 and remain in healthy remission. Kay

More feedback...

Would you volunteer for this group again?

Definitely

For the time you spent, how much of an impact did you feel your work or activity had?

Life-changing

Did the organization use your time wisely?

Very Well

Would you recommend this group to a friend?

Definitely

When was your last experience with this nonprofit?

2013

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