Events are a great way to increase awareness about PKU while raising funds. The monies received from events are vital to our mission and go a long way toward helping those with PKU. The important thing to remember when you are planning a fundraising event is that it can be anything you want it to be. Bake sales, golf outings, formal black-tie galas, or run/walks all serve the same purpose—to bring people together while raising money and awareness about our cause.

Fundraising events require a lot of investment in time, money, energy, favors, and other resources that can make your return on investment lower than you hope. If your only goal is to raise money, you may consider a simpler ‘ask’ campaign, in which you, your committee members, and others involved in the PKU community simply ask their friends to donate to your cause. While this may be uncomfortable for some, every dollar you bring in can go toward your goals.

Using mobile tools may help both spread the word about your event and help increase funds raised because it make it easy for people to donate online.  The NPKUA has a service through Mobile Cause which allows us to set-up fundraising pages to aid in any fundraising event.  It provides a link to be copied into emails or posted on social media.  It also has a feature that allows your friends, family and others to access the donation page via their mobile phone by texting a keyword to a designated number.  NPKUA receives all online collected funds directly from Mobile Cause.  Donations collected offline can be added to the fundraiser by mailing them to the NPKUA. Click here to see an example of a current fundraiser

A few important items to remember when you are planning an event: 

  • Make sure you have the time, talent and resources to make this event successful.

  • Be clear about your goal – are you seeking to raise money, awareness or both?

  • Whom do you want to attend this event and why?

  • Be aware of your budget allowance for the special event and stay within your means.

  • Social media is an important component with any event today.  

Potential Events:
For a list of event ideas click here.


If you are interested in a much larger scale fundraising event, please consider inquiring more on the Lifting the Limits for PKU web page. Lifting the Limits for PKU is a unique fundraising campaign designed specifically to raise funds for the NPKUA Fund, established to advance the science of PKU through the most promising and peer-reviewed research that will lead to new therapy discoveries and a cure. The main goal of the NPKUA Fund is to have at least one new treatment therapy in FDA clinical trials within the next 5 years.

We encourage you to join our efforts across the country by hosting an event such as a gala, concert, or other larger scale event concept, and commit to raising at least $100,000 in funds to benefit PKU research. This is an opportunity for you to make a difference in many lives, and help to ultimately find a cure for this rare inherited metabolic disorder.

Where Does the Money Go?

When you raise money and donate it to the NPKUA it can be designated to help support research or support important programs overall that provide the most significant impact for people living with PKU.

Your donation supports those areas that provide the most significant impact for people living with PKU. Donations may be sent directly to the NPKUA at PO Box 1872, Eau Claire, WI 54702. Please include donor names and addresses so we may send them a tax-deductible letter of acknowledgement for their gift.


If you have a fundraiser in mind and would like help shaping your idea, or to discuss how Mobile Cause may help your efforts, please contact Michelle Pernsteiner, Event and Development Coordinator, or (715)495-4008.