May 29, 2013
When my grandson was diagnosed with an Eosinophilic Disorder in December 2012 an internet search led us to APFED.org. American Partnership for Eosinophilic Disorders has since been been a tremendous help to my daughter. The information listed on their website helped us understand more about this rare condition. It helped her communicate questions, concerns, suggestions to her son's various physicians. It also gave my daughter a place to connect with other families dealing with this disorder. That alone is extremely valuable. Both my daughter and myself found a "purpose" in volunteering to help American Partnership for Eosinophilic Disorders. My daughter lives in a rural area and has enjoyed doing editing work for APFED. I just completed a thirty day endurance event to create awareness of Eosinophilic Disorders. In appreciation for our efforts APFED help defray travel expenses so that my daughter and grandson could be a part of APFED's Day on Capitol Hill during National Eosinophilic Awareness Week. My daughter and grandson were able to speak with several members of Congress to bring awareness of this disorder and to lobby for research funding.
Ways to make it better...
If I had to make changes to this organization, I would...
Hope they can obtain fundraising permits in Washington, D.C.
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