Dear PURAperfect Family:
It has been about a month since I first got to meet a number of you, and less than 5 months since joining the PURA Syndrome Foundation. As I sit here at a computer screen, in a quiet house at the end of a day, it is finally starting to sink in how much has changed in my life in that short time.
Some of the most profound life changes that I'm experiencing are involving the Foundation itself. Notably, the Foundation has successfully completed the recent conference in Philadelphia, and many of us got to meet one another in very non-virtual ways. I have heard from a number of you about the importance of openness and celebrating our accomplishments and contributions. The PURA Syndrome Foundation made its first grant just before the conference, and is working to issue a major grant that will provide a basis for future research. As a young organisation, the Foundation is putting policies in place and listening to you, the families, about how to best serve you.
The PURA Syndrome Foundation has been, over the last 2 years, organising and researching goals to start a registry and a biobank. The Foundation has been working with the PURA Syndrome Global Research Network to establish funding priorities for pilot research programs: we're learning how complicated much of this work is. We have been working to find and team with international research institutions for development of research programs and advocates to help us, to help you. The Foundation has been working to promote personal interactions with not just the families, but also with the research and clinical community through our annual conferences.
So far in excess of $70,000 USD has been raised for the PURA Syndrome Foundation, of which we are now stewards. The Foundation is committed to use this money in productive, positive ways that will maximise learning about the PURA gene, Pur-alpha protein, and PURA syndrome. I fully intend, within the first quarter of 2018, to be issuing an annual report. This is to let you know what the Foundation is doing, but also to hold it accountable as to its progress. I want to celebrate what you have done for the Foundation and to announce our partnerships. I also want to confirm that the PURA Syndrome Foundation is raising and granting money wisely.
Hopefully to answer:
Are we communicating with you well?
Are we answering your calls for progress and help?
Are we doing the right things?
Are we helping to find you answers about PURA syndrome?
With that said: don't be afraid to reach out now. Please feel free to express what you are looking for, or questions you have. Let me know how the Foundation might improve things. And, if you want to help with a project - let me know too.
Here's to the continuing seasons we are all going through!
President, PURA Syndrome Foundation