DIY for NPKUA FAQ's

What is DIY fundraising?

DIY (Do-It-Yourself) fundraising allows you to create your own personalized fundraiser to support the National PKU Alliance. You choose the activity—whether it’s a birthday fundraiser, bake sale, walk, fitness challenge, game night, or celebration—and raise funds your way.

Who can participate?

Anyone! Individuals, families, friends, schools, community groups or workplaces can create a fundraiser in support of the PKU community.

What kinds of events or activities can I create?

Anything that feels meaningful to you. Popular ideas include:

  • Birthday or milestone fundraisers
  • Tribute pages honoring someone with PKU
  • School or workplace challenges
  • Bake sales or lemonade stands
  • 5Ks, hikes or fitness challenges
  • Game nights or tournaments
  • Creative projects (craft sales, art shows)
  • Awareness events for PKU Awareness Day or Rare Disease Day

If it brings people together and supports NPKUA, it qualifies!

How do I get started?

It’s easy:

  1. Visit the NPKUA DIY fundraising platform (link).
  2. Select “Create a Fundraiser.”
  3. Choose your event type or build your own.
  4. Customize your page with photos, your story, and your fundraising goal.
  5. Share it with friends, family, and social networks!

If you need help, we’re here every step of the way.

Is there a registration fee to participate? 

There is a no registration fee to participate in DIY for NPKUA.

Is there a minimum fundraising amount?

No. You can set a goal that feels right for you. Every dollar makes a difference for the PKU community.

What does the funds raised by DIY for NPKUA support? 

Funds raised will go towards supporting the mission of National PKU Alliance, including: 

  • Community support programs   
  • Educational resources for navigating life with PKU, from birth through adulthood.  
  • Research of exciting new treatments, such as gene therapy and medical devices, like a home Phe monitor. 

Are donations tax-deductible?

Yes. NPKUA is a registered 501(c)(3) nonprofit. All donations made through your page are tax-deductible to the extent allowed by law. Donors will receive an emailed tax receipt automatically.

Can I mail in my donation?  

Yes! Donations can be mailed to 2014 Electric Road, #212, Roanoke, VA 24018. Please make checks out to NPKUA and indicate that your donation is for “DIY for NPKUA” and write the individual to credit the donation to, if applicable.

How do I share my fundraiser with others?

Your fundraising page includes built-in sharing tools. You can:

  • Email your supporters directly
  • Share on Facebook, Instagram, or Twitter
  • Text your fundraising link to family and friends

Personal messages and photos make your fundraiser even more successful.

Can I host an in-person event?

Yes! Many participants choose to host community gatherings such as:

  • Picnics
  • Runs/walks
  • Birthday parties
  • Backyard barbecues
  • School events

Can NPKUA help promote my event?

We love celebrating our DIY fundraisers! While we can’t promote every event individually, we are happy to:

  • Share your event on our social media when possible
  • Provide sample messaging, graphics, and branded materials
  • Offer guidance to help you succeed

Email susie@npkua.org to let us know what you’re planning.

What resources do you provide?

DIY fundraisers receive access to:

  • Customizable fundraising pages
  • Social media graphics
  • Email templates
  • PKU facts and education materials
  • Tips for reaching your goal
  • Staff support when needed

What if I need help setting up or editing my page?

We’re happy to help. Email susie@npkua.org and she will assist you with setup, edits or troubleshooting.

Can I collect donations offline?

Yes. Cash or checks can be processed by NPKUA and added to your online fundraising total. We’ll provide instructions upon request.

Can my company or workplace get involved?

Absolutely. Ideas include:

  • Corporate match programs
  • Casual/dress-down days
  • Employee challenges
  • Volunteer days
  • Office fundraising competitions

We can help you set up a workplace-friendly page.

Can I fundraise in honor or memory of someone?

Yes. Tribute or memorial pages are a meaningful way to support the PKU community. You can include photos, stories, and why this cause matters to you.

Who do I contact with additional questions?

We are here to help. Contact Susie at susie@npkua.org and we’ll support you every step of the way.