Ruth Roy's Quilt Raffle to Benefit CPF

How did you hear about the CPF?
I heard about the Coalition because my husband, Tim, had been diagnosed with pulmonary fibrosis in 2004. We tried to seek out anyone who had information and we found it on the internet. I was previously a nurse and used to work as a VP with an HMO. We were visiting the CPF website, trying to see what other options besides lung transplant were available.

What was your inspiration for creating the quilt?
When you receive a diagnosis such as IPF, it is very easy to feel that you have lost total control over the event and your life. I do have control over who or what I will raise money for. It makes me feel like I am doing something for him. It goes back to mixing personal with business. As part of my business, my mission statement has in it that we will be good corporate and community citizens. We are active in community events. We have done several things, like each month a group meets and sews quilt tops for Children’s Hospital. To date, we have contributed 740 quilt tops.

With Tim’s diagnosis, we wanted to get our customers involved in doing a quilt for IPF; it was an easy fit. The quilt is one of a kind. It was created for our Tri-State Shop Hop in 2004. Each of the 12 shops had a specific block and we all had to use the same fabric line. The yellow block is the Aunt Ruth’s quilt block. Aunt Ruth’s quilt uses traditional blocks in a contemporary setting. The quilt is Aunt Ruth’s version of how to put all of the blocks together. Customers know Tim. We have been in business for three years (opened Oct. 1, 2002). The first year, he was at the shop quite a bit helping me out. We now have seven part time staff members, so he does not need to be there as much.

When you started your fundraiser, were your customers familiar with IPF?
Before Tim was diagnosed, most [customers] weren’t familiar with IPF – they had no clue what I was talking about. I have done an awful lot of clinical discussion with people who are asking questions. I really was not that familiar with IPF, even as a nurse I vaguely knew about it. I didn’t know how [a person] got it and didn’t know there was no treatment. I knew there was scarring. I tried to come up with a time when I was taking care of a patient with that diagnosis. I couldn’t remember them.

When did you leave nursing?
In 1982 I left bedside nursing full time, stayed part time while also working full time at a local physician-owned HMO. In 1992, I moved to Indianapolis and worked for Anthem as the director of Medical Management and in 1996, I moved to Nashville and was a vice president for Medical Management at HealthNet.

How did you find the CPF?
I wasn’t sure how we were going to be connected to the CPF because when somebody tells you that there is no treatment other than transplant, then [transplant] is where your energies lie. As the weeks would go by, our focus was on contacting the transplant programs. When it was all first happening, he wasn’t feeling well and he was on Prednisone. Mostly, we were skimming websites of anyone who had any info on anything. We saw that there were educational seminars through the CPF.

When the transplant program at the Cleveland Clinic asked us to find another transplant program, I started feeling that there had to be something out there to help him live his life as best he could as long as he could, even without transplant. I went to the CPF site and saw a seminar being put on at Emory University. On one level, it was fine, because Tim had never talked with anyone else who had IPF – see them, meet them or cope with the disease. While we didn’t hear anything that we hadn’t heard before, what really struck [us] was the lack of funding and the lack of attention to that disease entity. I decided if I couldn’t do something on a national level, I could do a local story. I could contact local newspaper folks.

Did you use the CPF fundraising kit?
No – I first contacted my lawyer to see if I was going to stumble into anything that would do the business any harm. My attorney said I should contact the CPF to make sure they were aware of my effort and then when the event was over, I should give the funds to the place it should go to. I like the fundraising kit, though, and I recommend people use it in their efforts.

Have you begun to see good things happen around your efforts?
There is a sweet story that has happened already. One of our staff said I should talk to this lady who had come into the store. She wanted to buy $50 worth of raffle tickets. She read we were doing this in the local paper (The Valley Courier). The Sharonville writer wrote about it in her column. The lady came over and by the end of the conversation, we both had tears in our eyes. She was buying raffle tickets for her mom and siblings. The first anniversary of her father’s death was the next day (he died from IPF). When she saw it in the newspaper, she said “this is right” and she had to do this.

How have you been able to promote the raffle fundraiser?
Through my newsletter (see www.auntruthsscrapbasket.com, available twice a year via print and email), and I have promoted it in-store – the quilt is hanging there.

There are signs on it, and we are very verbal about pointing it out. One of my staff also volunteers at the Gorman Farm, a working farm and living museum about a mile and a half from our store where a quilting group meets every Wednesday night – they offered to have the raffle quilt displayed there so that they can sell tickets too.

What are people saying about the quilt? IPF?
They love the quilt. It is much prettier in person than in the picture. Folks always want to ask me how Tim is. I am still learning how to answer their questions. Folks have the misconception that this is something you feel bad for a while and then you get better. I usually say, he is stable, he is no worse. Depending on who it is – I might also say “with this disease there really is no better. It is progressive. It won’t let go of you.” And then they often say, “Oh, I didn’t know that.” I tell them that “diseases get placed in different categories…acute, chronic and terminal. IPF is terminal.” That is where the light bulb really goes off. People, for the most part, don’t have that understanding. They haven’t spoken with others who have had IPF.

Two customers have had a close experience [with IPF] with a family member or a person they work with. I have one customer who has IPF and wears her oxygen into the store and has been a very big help to me in trying to get my hands around who I am with this.

How much money do you hope to raise?
My initial goal was $500, but I think we are going to do better than that. Our goal is to do this every year. This isn’t a one-time shot.

When is the raffle itself being held?
We’re selling raffle tickets now, every day. We will keep going until Oct. 13, the date of the drawing.

Will there be an event around it?
We decided to hold it in October because of IPF Awareness Week.

Are you planning to tell media about it in your area?
Yes, we contacted our local newspaper and they have already done a local story in a column. It generated much interest in our fundraiser.

What do you hope to achieve with the quilt raffle, other than raising money?
I can keep this going – as long as I have the shop – over several years it will really add up.

What would you tell other people who are interested in doing a fundraising project of their own?
Don’t wait too long. Don’t sit and wait for someone to come to you with an idea. Come up with your own!