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Putting A Stop to Alzheimer’s, One Quilt At A Time

The Alzheimer’s Art Quilt Initiative has raised nearly $900,000 to fund Alzheimer’s and dementia research since 2006. 2013 is their "Sprint To The Finish," and they hope to hit the $1M mark by December 31st.

By Mary Otte

The Alzheimer’s Art Quilt Initiative (AAQI) first caught my eye on Facebook, where after discovering their wonderful page and mission, I was entranced by the beautiful art quilts “a gypsy in particular” and what each one of these individual works of art would mean holistically in the long run.

AAQI is a national, grassroots 501(c)(3) charity founded by Ami Simms of Flint, Michigan, who is an avid quilter and whose mother had Alzheimer’s. Even before becoming an independent non profit, AAQI’s mission has been solely focused on raising Alzheimer’s awareness and funding research via quilt auctions and sales of donated quilts. The AAQI has raised more than $883,000 since January 2006. The goal: to hit $1,000,000 by the end of 2013, when Ami hopes to get back to quilting after the AAQI’s “Sprint To The Finish” is complete. 2014-2015 AAQI will “take a break” to monitor the research they’ve made possible thus far.

The AAQI currently sponsors two major programs:
Alzheimer’s Illustrated: From Heartbreak to Hope The first is a nationwide traveling quilt exhibit called Alzheimer’s Illustrated: From Heartbreak to Hope” It features 182 “Name Quilts” six inches wide and seven feet tall, containing the names of more than 10,000 individuals who have or had Alzheimer’s disease or a related dementia. Hanging among the Name Quilts are 53 small format art quilts (9” x 12”) that each interpret Alzheimer’s in some way.

Priority: Alzheimer’s Quilts
The second is the “Priority: Alzheimer’s Quilts” project, so named for the urgent need for research dollars and the hope that quilters across the country would make participation in this project a priority. These small quilts fit inside flat rate cardboard priority mailers from the USPS, which the group uses to ship quilts to winning bidders after monthly online auctions.

Nearly all funds go toward specific Alzheimer’s research, like the 2012 grant awarded to Dr. Domenico Practico of Temple University ($60,000) for the study: “Corticosteroids, 5Lipoxygenase & Alzheimer’s Disease”

Ami Simms talked to Parentgiving about her vision and how AAQI really works.

Parentgiving: Do you work with or donate to The Alzheimer’s Association?

Ami Simms: We have given money to the Alzheimer’s Association for research before we became our own nonprofit. We also helped fund two New Investigator studies. The other nine research grants we awarded directly to universities for specific studies.

PG: Do you mind giving us a little insight into how you arrived at having such a firm focus on research and how to choose which programs to fund?

AS: Research is the key to stopping Alzheimer’s. We have a Scientific Advisory Board that vets each grant application.

PG: How long has the Alzheimer’s Illustrated exhibit been touring?

S: It started touring in 2010.

PG: How much goes back into the two programs (“Alzheimer’s Illustrated: From Heartbreak To Hope” and “Priority: Alzheimer’s Quilts”) and how are they otherwise allocated?

AS: Very little money goes into our two programs. There are very few costs associated with them.

PG: What inspired you to become an independent nonprofit?

AS: I wanted to operate differently than traditional charities so that as much money from our donors as possible could go to research.

  • We’re based on sweat equity. People make quilts and donate them to us. We sell the quilts. We don’t fundraise in the traditional sense and it is very cost effective.
  • We’re all volunteers. Most of the work is done out of the homes of our volunteers who are scattered across the country. No salary, no rent.
  • We’re totally Internet driven which keeps costs down.
  • We are the most transparent charity around. Our “Show Me The Money” page shows where every dollar comes from and what we spend it on. We don’t just post our 990, we spell it out in language that people can understand without taking a class in accounting. We buy a paper clip and it goes on our website. Plain English.
  • Most of our volunteers know someone with this disease. They are passionate and driven.
  • When we fund research we don’t pay for overhead.