Diane - Diane Gaudynski’s Return to Provence raised the most money of any quilt in the AAQI auction with $7,500 in 2013.

Exhibit - A woman is touched by reading the artist’s statement on an AAQI quilt.

A Million Reasons for Hope
Alzheimer's Group Reaches Fundraising 
Goal with Fabric

Ami - Ami Simms (left) and Niki Gottesman (AAQI Board Member) have some fun at the AAQI booth at the 2013 International Quilt Festival/Houston. Photo by Tony Ruppe.

At the recent International Quilt Festival in Houston, attendees who traveled onto the far right side of the special exhibits area certainly heard a lot of whooping and hollering at a certain booth.

The screams of joy undoubtedly emanated from the Alzheimer’s Art Quilt Initiative area, signaling the sale of another donation quilt whose price the organization donates to research into curing the disease that affects millions. The organization was founded in 2006 by quilter, teacher, and designer Ami Simms.

But the whoops and hollers were especially loud at one point when the AAQI finally surpassed their goal of raising a total of a combined $1 million since its inception. Friends@Festival recently spoke with Simms about it.

F@F: Take me to the exact moment at the show when
you realized you hit $1million. What was it like? How
did you feel?

Simms: The AAQI Board of Directors has a pretty good grip on finances. We report monthly to our supporters with our Show Me The Money page on our website. (If we buy a paperclip, it goes on the website.) Projecting ahead after IQF 2012, we saw we would most likely reach the million-dollar mark during IQF 2013.

I predicted it would be Friday or Saturday, but our sales were very strong Wednesday night. We were within $1,000 of the million at that point. We knew we would hit if after the first credit card batch on Thursday morning, and we did!

Going back, why did you decide to start AAQI, and
how have the organization's goals and aims morphed
over the years?

My mother had Alzheimer's. She was diagnosed in the fall of 2001 and moved in with us. I was her primary caregiver for four and a half years until she moved into an Alzheimer's unit near our house.

It was so hard watching her go through this. Alzheimer's isn't about forgetting where you put your car keys or where you went on vacation 12 years ago. It is progressive, relentless un-learning of every skill you ever learned, even the most basic ones. In the early stages, my mother knew something was wrong and she was very frustrated and agitated. Towards the end, my mother forgot how to sit and had to be cued step-by-step to lower her body into a chair.

My mother died in 2008. From beginning to end, this is a vile disease.

Watching someone you love go through these changes is heartbreaking. I knew the disease would take her life but not before it would strip her of every memory, every relationship, and every skill. She would be totally dependent on others for everything.

I started the Alzheimer's Art Quilt Initiative because I could. I knew how to mount a quilt exhibit and as a national teacher, I have a voice in the quilting community. I decided to use the skills I had to fight back. Once I thought of the concept, I couldn't not do it.

Tell me a bit about what you learned about the disease
you would have never known before.

Looking back, I knew very little about Alzheimer's when I started. I read everything I could about AD. The science of it is very detailed and was way over my head. I just kept reading, hoping something would stick. Now I know just enough to be dangerous. This is why the AAQI has a Scientific Advisory Board to review and evaluate the grant applications and advise the Board of Directors on which studies to fund.

On the one hand, I knew there were (at that time) more than four million Americans with Alzheimer's, but I felt all alone, totally isolated, struggling by myself. I made quilts to satisfy my own creativity and to help me deal with the heartache. I felt that as I lost my mother bit by bit, and yet it never occurred to me setting up the Initiative that our volunteers would find making quilts healing too. Odd isn't it?

How did you go about soliciting quilts to sell over
the years?

It's all been word of mouth. AAQI is one of the few charities that doesn't spend money on fundraising. All I had to do was ask. Quilting has a strong heritage of generous giving and caregiving as well.

We also tried to honor each donation by creating a web page for it complete with picture, description of the quilt, artist statement, dedication, and the amount it eventually raised for the AAQI. We challenged quilters to challenge each other through programs like the $1,000 Promise, the Quilt-A-Month Club, and Guild challenges.

Explain a bit about where the money raised goes.

All our profits fund Alzheimer's research. After our modest expenses, we buy science. Scientists apply to the AAQI for grants ranging from $10,000 to $100,000. Applications are vetted by our Scientific Advisory Board and presented to the AAQI Board of Directors for funding. We have funded 17 grants to date: http://www.alzquilts.org/researchawards.html

Will it be bittersweet a bit to dissolve AAQI next month
or stop fundraising?

Yes. But, even though we stopped accepting quilt donations in August and we stopped selling quilts and soliciting for donations at the end of December, there will be quite a bit of work to be done through the beginning of next year.

We have about $250,000 to award. And, the AAQI will continue to exist
for another few years to monitor the research we will fund at the beginning
of 2014.

I will certainly miss seeing all the quilts. I got to see each of the 15,639 donated quilts. (And they all lived in my house!)  It is amazing to me still, how creative quilters can be. But I look forward to thinking about something besides Alzheimer's. I've been thinking about Alzheimer's non-stop for more than 13 years.

Thankfully, the AAQI has been blessed with a great many core volunteers who have stepped up and shouldered the burden. These are remarkable women (and men) who have put their heart and soul into our organization.

What is the most important thing that you hope people take away after reading this?

I remember reading this quote attributed to Anita Roddick shortly after the Alzheimer's Art Quilt Initiative began: "If you think you're too small to make a difference, you've never been to bed with a mosquito." It gave me the courage to think that what I had envisioned might actually make a difference.




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