We have had a lot of great things happening over the past few months at the PURA Syndrome Foundation! Our conference in June was once again a wonderful weekend full of love, laughter, a few tears, and most importantly our PURA family. That weekend always helps to re-energize us and keep us focused on doing what’s best for all individuals with PURA Syndrome and their families. We are always grateful for anyone who can join us in person, virtually or those who take the time to watch the videos on our conference website to see our amazing presenters. Next year, we are heading to Europe and will hold the conference in Munich, Germany. More information to come!
Prior to the conference, we held our first open scientific meeting for any scientist, clinician, or organization focusing on PURA Syndrome and PURA Syndrome related issues. We welcomed participants from seven countries and 10+ U.S. states. We look forward to making this an annual event and are grateful to all who participated both live and virtually for open, collaborative discussions!
We are thrilled to announce that we met our recent $25,000 match goal set forth by a very generous PURA family which means we were able to meet our overall goal of $250,000 for our Together for PURA campaign! Over 20 teams and 658 individual donors helped us achieve our goal from June 2024 – June 2025. We are in awe of the generosity and support received from our community – Thank you!
With our Together for PURA campaign wrapping up, we won’t let that stop us from using the motto “Propelling Forward into the Future.” Our scientific advisor, Kathryn Post DeMott, presented our Landscape Analysis at the conference, highlighting research gaps that need to be filled and areas we should financially support in order to continue moving research forward. The full Landscape Analysis can be found on our website under the Research tab.
In May, we announced that the PURA Syndrome Foundation budgeted $200,000 to invest in PURA research through 2026. Soon after, we launched our Request for Proposal process to attract new researchers, while continuing to collaborate closely with those already engaged with PURA to advance our strategic priorities. We are ecstatic to say we received over $300,000 in proposals from around the world! While we won’t be able to fund all of them, we are excited to have this much interest in PURA Syndrome and would like to keep our fundraising efforts going in order to propel our research forward!
We are happy to announce that Brian Jobin, father of PURAperfect Brandon, has accepted our invitation to head up our Fundraising Committee and he has a lot of wonderful ideas for fundraising to aid in advancing research and also to support our families worldwide. Welcome Brian!
We couldn’t be more excited about what is to come and are so grateful for your continued support. Stay tuned for more updates coming soon, including exciting registry and biobank updates.