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Welcome Our New President Amanda Shanks!





Exciting News!

I'm glad to be able to announce to you some exciting news at the Foundation!

The PURA Community has grown and changed since the start of the Foundation in 2015. Through our internal strategic planning we have realized that we need to change to keep up. We have implemented several new strategies to engage researchers and the PURA Community and we hope that you’ve noticed some of these changes so far.

One change is taking place now is I am taking on a new role at the Foundation of Past President. Throughout our discussions and strategic planning, as well as our recent recognition of life changes that COVID has inflicted upon us, we as a board felt now is a good time for this transition.

I am proud to announce that Amanda Shanks is taking on the role of President. I've been meeting with her weekly since August and will continue to do throughout the end of the year to help train and show her the ropes, so to speak. I will continue to actively participate on the board as Past President until the end of 2021, as well as help complete several projects that Foundation is working on. As part of my role as Past President, I will be helping Amanda and I expect this transition will continue over several more months.

We at the Foundation are excited for these changes and the fresh ideas, perspectives, and energy that Amanda will bring!

It has been a great honor and a privilege to serve as the President of the Foundation since March of 2016. Having accomplished many goals for the foundation in this time, some remain in progress. I think this last 4+ years has been transformative, with our numbers continuing to grow, the imminent launch of a global registry, our international conferences, our robust fundraising and outreach, the development of a strong research network and the publication and distribution of multiple research papers. And there will continue to be more work to be done and projects to help the PURA Community.

Let me take just a quick moment to make an appeal to you who may be reading this. Please consider helping us in some way to forward our mission and continue our successes. Helping us doesn’t have to mean joining the board as a full member or giving money but consider reaching out to us to help with projects or subcommittees for the conferences, research projects, grant approvals, or the like. Together we are stronger and together we will make life better for all of the PURA Family!

I am very indebted to all of you for your support and work, not just with me personally but also with the PURA Syndrome Foundation. Obviously, this is personal to all of you as it is to us. Thank you for all that you have done!

Very truly yours,


D


Dominic J. Spadafore, AIA

Past-President

PURA Syndrome Foundation

d.spadafore@pura-syndrome.org


The PURA Syndrome Foundation is a registered 501(c)(3) charity organization. Information on this website is not a substitute for personal medical advice. Families should consult a medically qualified physician in all matters relating to genetic diagnosis , management, and health . Information about PURA and genetics in general is a very fast moving area and while the information on this website is regarded as the best at the time of publication , some facts may change later .