December 2024 Update: $100,000 Match!

It is with great excitement and appreciation that we announce that a PURA family has come forward and offered to match donations up to $100,000 for our Together for PURA Campaign! Every donation to our Together for PURA Campaign made through Rare Disease Day, February 28, will be matched up to $100,000. If you have yet to give or would like to double your gift dollars, this is the time! 

Let’s maximize the match and really make a difference! Join us and be part of real change and forward movement. For information, guidance and fundraising ideas, see below or contact Nancy Boccia at [email protected].

Together, we can do this!

October 2024 marks 10 years since the first papers were published on PURA Syndrome. Prior to that some families had gone decades without a diagnosis. Since that time, our community has grown to over 650 strong and we’ve made great strides in research and supporting families. Help the PURA Syndrome Foundation continue our mission to support our PURA Perfect community by participating in the 2024 Together for PURA Fundraising Campaign.

We are committed to raising 250K to support our mission. To reach this goal we need every family, every extended family, every connection, every local business, every media outlet, every small business and every big corporation to be part of the vision and move this forward. Together we are stronger!

DOUBLE YOUR DONATION!

Together We Are Stronger!

How to set-up your fundraiser:

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Start the Process

Go to: https://givebutter.com/c/pura2024

  • Are you creating a team? Click “Fundraise”
    • You will need a team name, team logo (400×400 and no more than 500KB), fundraising goal and story.
  • Are you joining a team? Click “Join a Team”
    • You will need to select the team you are joining, set your individual fundraising goal and create a story if you’d like
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Start the Process

Market your event or activity

  • Utilize local newspapers, radio/tv stations
  • Use social media to create a buzz – countdown on FB, Instagram.
  • Make a TikTok video
  • Contact PURA for graphics for signs/ads
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Start the Process

Publish your team’s progress

  • Add a visual for team goals on the website
  • Add photos of activities on the website
  • Add notes/graphics on the website
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Start the Process

If you have any questions or need assistance, please contact Nancy at [email protected].

FAQ

What payments does Givebutter accept?

Givebutter accepts Credit Cards, Venmo, Paypal, ACH for U.S Customers and you are also able to mail a check to the following address:

PURA Syndrome Foundation
129 Shelf Rock Rd
Driftwood, TX 78619

Are there official graphics or flyers we can use?

Yes! Here’s a link to our Official Together for PURA graphics, logos, presentations and branding kit.

Fundraising Ideas

Holding a public event:

  • Concert at a venue
  • Party at a bar or restaurant or event space
  • Tournaments/sports/games nights​

Private events held in the home of the fundraiser:

  • Host drinks or a meal in your home
  • Home shopping experience

Online fundraisers:

  • Honor a child’s birthday, your birthday or other special milestone
  • Fundraise for a race/event (see

Events held by local eateries, retailers or your place of employment:

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