Action Item: National Plan for Epilepsy in the US

by PURA Syndrome Foundation | Apr 29, 2025 | Advocacy, News

U.S. Families and Friends of PURA, please take a moment to ask your elected officials to support and cosponsor the National Plan for Epilepsy! If your elected official is already a sponsor, you will be able to send them a thank-you message instead. Use VoterVoice to...

Together for PURA $25,000 Match!

by PURA Syndrome Foundation | Mar 20, 2025 | News, Together for PURA 2024-25

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...

Caitlin Clark Signed Memorabilia for Auction!

by PURA Syndrome Foundation | Mar 17, 2025 | News, Together for PURA 2024-25

We have a PURA family connection to American professional basketball player Caitlin Clark’s family, and they generously donated the following signed sports items for us to auction off to benefit our Together for PURA fundraiser: Iowa Hawkeye long-sleeved t-shirt...

🎉We met our match! 🎉 March Madness Auction Coming Soon!

by PURA Syndrome Foundation | Mar 7, 2025 | News, Together for PURA 2024-25

Hooray!  We did it! Thanks to your generosity, we made it to over $100,000 on Rare Disease Day, February 28, and will receive a match of $100,000 from an equally as generous PURA family! Our overall goal for the Together for PURA campaign is $250,000, and we will...

Advocacy Raises Awareness!

by PURA Syndrome Foundation | Feb 9, 2025 | Awareness, News

Rare Disease Day is 19 days away! We’d like to share this story about how a PURA family is raising awareness for PURA Syndrome by lobbying their state legislature for better healthcare. Do you have a story to share? Put it in the comments below! Interested in joining...

Rare Disease Day: Friday, February 28, 2025

by PURA Syndrome Foundation | Feb 1, 2025 | Awareness, News

In less than five weeks, the PURA Syndrome Foundation will join together with other rare disease organizations across the globe in celebrating World Rare Disease Day. Rare disease day is dedicated to raising awareness among the general public and key decision-makers...