PXE Fundraising 101


Download PDF "PXE Fundraising 101"
By Julia Holman
This article first appeared in the Spring 2006 PXE MemberGram.


1. Make a list of everyone you know. This list will become your invitation list. It might include: 

  • Friends
  • Family, including the most distant of cousins 
  • Bank tellers
  • Grocery store cashiers
  • Co-workers
  • Church family
  • Parents of your children´s friends
  • Your children´s friends
  • Your mother´s garden club
  • Your dermatologist, retina specialist, primary care physician and any other medical professionals who participate in your medical care
  • The person from whom you buy your cup of coffee each morning
  • Anyone you always wanted to know a little better but hadn´t taken the time to do so
  • Other people in your area who have PXE

This was really fun for me! I met three other PXEers; two of these persons had never met anyone else with PXE. They brought all their family members too!

2. Think of an event that you as well as the people on your invitation list would enjoy attending. In my case it was eating desserts and buying arts and crafts.

3. For each person on your invitation list, decide how you can ask him or her to help.  The categories I created were:

  • Guest – Invite this person.
  • Volunteer – Will this person stay late and help clean up? Does this person want to come but is not really into socializing? I put one individual like this behind the camera. She loved it! Does this person have cute teenage daughters who will come and help, which might motivate my teenage son to help?
  • Donor – Will this person donate money, goods or services?

4. Pick an event name, location and date.

  • Name – If you plan to make it an annual event, then name it! We wanted an alliterative name, we wanted it to feature our community name of Bellevue, and we wanted it to relate to desserts. So we went through the dictionary looking for “B” dessert words and found “Bonbon.” Final result: Bonbon Bellevue.
  • Location – We asked a local church to provide the space and they were glad to do it free of charge!  Most community centers, some public school facilities and many churches will provide space at no charge. The location needs to fit all the people you want to invite.
  • Date – Make it on a night you can come and that the location is available. I recommend setting a date at least six months in advance.

5. Create a calendar of deadlines moving from your event date back to the present moment. Our calendar was full of “soft” deadlines, which meant we usually didn´t get stuff done exactly on the projected date, but it really helped us stay on track.

6. Plan your media for the event.  Where possible, secure commitments for newspaper articles, free ad space or radio announcements, etc. Have your media plan available when you approach sponsors. Good media contacts for us included all community newspapers, church, club and medical center newsletters, television and newspaper medical reporters.  And yourself!  Keep telling everyone you know!

7. Make a list of everything you will need for the event. Ask friends and businesses to donate items on the list. If they say no to what you asked for, have an alternative which they can say yes to. If they say no to that, then say thanks and give them an invitation! On some, I noted if their negative response was because they needed more notice. For instance, some businesses budget quarterly, monthly and semi-annually.

I have a friend who owns a garden center in our community. They probably get at least 10 requests daily to be a sponsor of an event. When I went in to talk to him about what he could give, I could tell just from his body language - I can´t see faces all that well – that he was thinking, “Oh no, not another one.” And then I thought, “He takes beautiful nature photographs. I´ll ask him to donate those.” He was so pleased that I asked him to do this, he gave us two beautiful 18” x 20” photographs that brought a couple hundred dollars in the auction.

8. Design and send out the invitations. Make sure your invitation has a reply or RSVP card so if people can´t come, they have the option of sending money! Nearly 20% of our proceeds came from this category of donor. Tell everyone you know. Carry a pocketful of invitations. And keep inviting people until the very last minute!

9. Create posters, write articles and press releases. Send them out!

10. Prepare a To Do list for the night of the event including a schedule and volunteer duties and shifts. For example, how many people do you need to serve desserts, heft eight-foot tables, or greet people at the door?

11. Put on your party clothes and go and have fun! Every time I saw each person I invited walk through the door, I felt LOVE AND SUPPORT!!

Let PXE International know what you are doing – they can send you brochures, donation envelopes and lots of moral support!


My personal story:


I work at a scrapbook/rubber stamp store. My boss knows I am “hard of seeing” as well as a little hard-headed.

A friend who owned a rubber stamp company celebrated her business anniversary each year with a benefit auction. She asked friends to donate handcrafted items for the auction. A local charity was the recipient of funds raised. I asked her if she would consider letting PXE International be the recipient one year. She said she wasn´t sure if she was going to do the event again. So my boss suggested that we do one ourselves.

We decided it would be really fun to have a dessert tasting and cake walk to go along with the silent auction of handcrafted items, fine art and photographs, as well as services that friends and family could offer. My hair stylist donated a haircut; my sister donated landscaping services. Some donated classes to be auctioned off, and these were a big hit with the store customers. We asked area restaurants to donate their signature desserts and estimated that we would have around 100 or so people attend. We set a low ticket price of $5.00 because we wanted a lot of people to come. Out of 12 restaurants only two said no and one of them was a family-owned business we caught on a day that their air conditioning and walk-in freezer had both gone out! Everyone I asked to donate did.

We sold handmade cards in the store during the month prior to the event which not only generated $400, but also provided a way to promote the event in the store. People would say “What is PXE? I never heard of that.” The first four or five times, I blushed, stammered, rambled and in general felt embarrassed. But after the fifth time, I got my little speech down and actually learned how to talk about the disease on an informational level rather than as if I were saying “poor pitiful me.”

My boss used her email list of 1500 customers to promote the event on a weekly basis for almost two months. We received almost 100 items which were sold in the auction and sale. We received incredible homemade desserts for the cake walk. We received the most amazing desserts from the area restaurants including the “Fudgie Wudgie Chocolate Cake” at 750 calories per slice. Yikes!

I retired from being a “Certified Professional Fundraiser” 10 years ago and often thought I should put my skills and experience to use to benefit PXEers. But whenever I mulled it over, it always seemed like a difficult task to raise money for a disease that affected me personally. By allowing my employer, friends, family and even strangers to participate in my life on this level, I have discovered new blessings from having this disease. How often do people you know get a chance to make a difference in your life like this? If you want to experience enjoyment and a whole lot of love, TRY IT!

P.S. I found that PXE International was a great resource for advice and support. Just being able to send an email with an update of what I was doing helped me to stay focused. And the encouraging replies that I received always fueled my energy. And I just want to say THANK YOU to my incredible mother, who has driven me everywhere I needed to go for the last eight years and who sat at the ticket table the night of our event and graciously greeted everyone for three hours! Special thanks to Adam Holman (my son) for all his hard work during setup and cleanup as well as running the Cake Walk with his friend David Murphy.