October 2024 marked 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!

Update 3/17/25: New $25,000 Match!

Remember that amazing PURA family that generously offered to match donations up to $100,000 by Rare Disease Day? Well, they were so inspired by everyone’s generosity in getting us to $100,000 that they pledged AN ADDITIONAL $25,000 in matching donations! This challenge will be in effect until our PURA Conference at the end of June and is an amazing opportunity to help us reach our overall goal of $250,000. To date, we have raised just over $202,000 and our goal is to raise another $23,000 (or more!) to take full advantage of the matching gift. Corporate matches can also help us reach our goal so be sure to check if your employer will match your donation.

If you would like more information about why you should give, contact Nancy at [email protected]. Please donate what you can and share the information with others. Thank you so much for your generosity!