We are excited that you are exploring ways to help raise awareness and funds to support the ULF. The fact that you are visiting this page means you have taken the hardest step, which is committing to join our nationwide movement to become a champion for those affected by a leukodystrophy. Know that the ULF board, staff and other community members are extremely grateful, and are here to help and support you along the way. 

Why is it so important to raise money for the ULF?

That’s the million-dollar question. And here’s the million-dollar answer —Because the ULF needs funding to exist and provide hope to affected patients and their families through programs of support and education, and research to find a cure. If not you, then who? There are teams of doctors, investigators and other healthcare professionals working hard every day to improve outcomes for this set of rare diseases. Medical and scientific research and clinical trials hold the promise of advanced therapies and hope, one day, to find a cure. One of the most important things that family and friends in the leukodystrophy community can do is raise money to support the ULF and its research grant program to advance these efforts and provide patient support and educational resources. Loved ones are often at a loss of how they can help, and this can be your answer. We need you to join the movement! 

So how and where do I start to organize my grassroots (personal or community) fundraiser?

Fun and purpose. Those are the two key ingredients to a successful fundraiser. The purpose is outlined above, now you need to add the fun. Start to brainstorm and choose an idea or event that focuses on something you, your family and friends enjoy doing. Also look around at other popular fundraisers in your community and either mimic it or consider a collaboration and sharing of the proceeds. 

The ULF has made it super easy for you by providing these four areas to help with idea generation and planning. Our hope is that these tips will send you down a fun and rewarding path to support the ULF. As part of this partnership, the ULF can offer the following to assist you in your efforts:

  • Permission to use the ULF’s name and logo for the event.
  • Promotion and recognition of your event in the quarterly newsletter, social media channels and website. 
  • Educational materials for distribution and assistance with marketing, design and ideas.
  • Notification of ULF patients and families in area of event.
  • Guidance and suggestions with event planning.

Simply complete the authorization form, to submit it to the ULF office and you are good to go!

What are the three most important things to remember?

1. Whether your fundraiser or event raises $50.00 or $5,000.00, it all counts!  Every dollar adds up and makes a difference for this rare disease community! There is strength in numbers…imagine if 50 families in the ULF community each hosted a fundraiser that raised an average of $1000 or more? That’s $50,000 —enough to fund one research grant, provide scholarships for patients to attend the national conference, or support key initiatives in ULF’s strategic plan. 

2. Remember, anything can be turned into a fundraiser with a little creativity. Literally, anything. Call the office if you get stuck. We’re here to help you help us!

3. The #1 reason people don’t donate is because they are not asked. So, don’t be afraid to ask. You’ll be surprised at how generous people can be! 

Scroll to Top