At our 2024 Conference, we launched our year-long Together for PURA Campaign, where we embarked on a bold mission to raise $250,000. These funds are important to continue and increase the initiatives of the global PURA Syndrome Foundation. Our top priorities and needs include:
- Exploring opportunities to find treatments for symptoms that affect individuals with PURA Syndrome.
- Ensuring the success of the current biobank and registry and exploring opportunities to expand them further. These two initiatives are fundamental to all PURA research and we need to make it successful.
- As the PURA Foundation grows, so do the administrative needs. We need to increase the effectiveness and efficiency of family support by adding paid professional administration. Over the last 10 years all work has been done by dedicated volunteers and as we grow, so do the needs.
You can help us achieve our goal by making a donation to our Together for PURA Campaign. Any amount would be greatly appreciated and would further our mission. Please also consider starting a team or hosting an event in support of PURA. There is no one-size fits all for this and our team is available to help plan. For details please visit our website or contact n.boccia@pura-syndrome.org.
We are a small group of dedicated volunteers. This is our first major fundraising campaign, and with your help, we can do it. Thank you for your support!