Pennies for PXE

Many thanks to Nancy Heyner and Kim Kerepka for all their hard work on our latest fundraiser, Pennies for PXE!

Pennies for PXE
They have already raised $656!
Great job!

Here are some of the tools they used to make it happen:
Pennies for PXE Bottle Label
Pennies for PXE Donor Letter
Pennies for PXE Helpful Hints

Below Nancy's story, don't miss an Interview with Kim Kerepka, PXEer and best friend of Nancy Heyner.  Go to interview


Pennies for PXE
by Nancy Heyner

We missed the 2006 Conference. We wanted to attend the “2007” Conference until we learned it was not until September 2008!!! So my best friend Kim and I attended in September 2008, and what a great learning experience!

Then on Saturday afternoon, Julia Holman spotted me. She said she was looking forward to seeing me in the Sunday morning Fundraising Session. I did not sign up to attend that, but guess where I found myself on Sunday morning? Having been involved with many fundraising events as a hospice volunteer, I thought it would be an interesting brainstorming session.

Rarely I watch the Oprah show, but one day I remember one of her guests was featured because she had raised $250,000.00 for the Angel Network. She raised that much money by collecting pennies. In the session on that Sunday morning, one of the ideas brought up was Pennies for PXE. I then knew why I was destined to attend that particular session.

Kim and I flew home Sunday afternoon, but were not seated next to each other so we could not talk. It was not until the next day, driving to my house in Maine, did we talk about Pennies for PXE. That day, between finding loose pennies in my truck, and finding them on the ground in parking lots, I counted 17 pennies. It was not that hard.

So after some brainstorming of our own which included: making a distribution list (130 names on it!), finding the right sized containers, getting the labels printed (by Karen Genoter – daughter of passed on PXEer Janice Chasse, and niece of Kim), trying to word the donation letter correctly, and then finding the correct size box to mail some of them… our PXE fundraiser was off and running!!! Our goal is to distribute a bottle to everyone on our list – all 130. And knowing how fundraising goes, if we get 50% returned, that will be great.

I had called Glaceau Vitamin Water and asked them for some of their “slightly damaged” bottles to use. Instead, they donated 75 full 32-ounce bottles! No problem finding volunteers to drink the Vitamin water, and almost all empty bottles were returned to me. The remaining bottles of different sizes I collected from another fundraiser.

So why did I decide on three different sizes?

  • The 32 oz. size is for large families, or for a countertop in a business.
  • The 24 oz. size is for a single person, or just two people.
  • The 10 oz. size is for kids, scouts, members of a church, etc.

Even though I would someday love to see the Pennies for PXE thermometer rise to $250,000.00 like on Oprah´s Angel Network, I know it will be difficult. But with your help, we can do it! If everyone reading this were to make 10 bottles and distribute them, think how this fundraising idea could spread! Let´s get these bottles in every US state, and then around the world. Already, a number of people have asked me for one or two additional bottles for their friends. And the information will soon be put into one church bulletin… then maybe a Girl Scout troop… The possibilities are endless!!

I know I want to do whatever I can to help raise money for PXE Research to find a cure for my lifelong best friend Kim, and for EVERYONE with PXE.

I hope you will all now reach down for those stray pennies on the ground!

Interview with Kim Kerepka, PXEer and Best Friend of Nancy Heyner
by Terry Mac Dermaid

Terry: Kim, how do you feel about your best friend Nancy's efforts on behalf of you and PXE International?

Kim: I feel a little embarrassed because I know some people have worse hurdles in life to face.

Terry: What was the funniest thing that happened during the preparation for the launch of Pennies for PXE?

Kim: The funniest thing was that both Nancy and I are perfectionists in different ways. I strive for appearance with the labels attached as if manufactured. Nancy wants the labels to stay on no matter what. She has a love of tape. Needless to say I was using one piece to attach the label to itself… no wrinkles and perfectly lined up, which unfortunately with my vision is not as I would like it. There was a lot of packing tape used so nothing was going to rip, tear or wet the labels. We laughed about that.

Terry: What was the hardest thing?

Kim: Hanging the bottles on people's doors was hard for me; Nancy did it.

Terry: The most touching thing?

Kim: The most touching thing about this whole experience is the passion that Nancy has for her fundraisers and the joy from the people as they bring me their filled bottles.

Terry: What else would you like to tell our readers about this fundraising experience?

Kim: This experience has shown me as an individual you can help make a difference with the right person leading the way. Hopefully the children of the parents I met in Washington won´t experience any of the effects of PXE. Thank you to PXE International for everything you are doing for PXE.