We have some exciting updates for you:
- In December, we announced that a PURA family has generously offered to match donations up to $100,000 for our Together for PURA campaign. This is an amazing opportunity to reach our goal of $250,000 by June 2025. Since the match was announced, we have received almost $15,000 dollars in donations and the momentum is building!
- Our very own PURA researcher Dr. Robert Janowski has graciously donated some of his artwork for us to auction off to benefit our Together for PURA fundraiser! We have set up an online auction featuring his two works of art and they will be open for bidding until Rare Disease Day on February 28, 2025. It can be accessed by following this link: https://givebutter.com/c/pura2024/auction
We have just over 6 weeks left until Rare Disease Day – you can be part of this extraordinary opportunity to raise awareness and funds by helping us:
- Share these links to your networks and ask your friends and family to share to their networks: https://givebutter.com/c/pura2024 & https://givebutter.com/c/pura2024/auction
- Do you have a local media contact that can help us with PR around Rare Disease Day? Would your family be willing to be interviewed by local news station? Please contact Nancy Boccia at [email protected].
- Engage your community in an event such as a pancake breakfast or X. We can help manage and provide resources for you!
- Check with your workplace for a matching program – we can help you with that too.
The need is great, and time is short. Please think about how you can help and if you need ideas or help, contact Nancy Boccia at [email protected].
View Dr. Janowski’s Paintings Here
