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Letter from the President


I hope this message finds you healthy and well. As I look ahead to 2021, it is also with deep, deep gratitude and appreciation that I am writing this letter to all of our families, friends, supporters, and donors. We are grateful for each of you who continue to support us in furthering our mission to fund research, educate, and serve families impacted by PURA Syndrome.

Last year was a challenging year for the Foundation. Due to the pandemic, research labs were temporarily shut down and some work was slowed. We are a volunteer-led organization, and many of our Board members, like many around the world, were forced to make hard choices and adjustments as they transitioned to working from home and caring for children with PURA Syndrome amidst a pandemic. Many of our in-person gatherings that provide meaningful connection and education for families, such as our PURA Syndrome Annual Conference and A PURA Perfect Night in Chicago, were cancelled in order to ensure the safety of our families and researchers.

Although the early shut down due to Covid-19 prevented us from realizing many of our goals in 2020, we have been amazed at your continued support. Due to you generosity, we are poised to make exciting investments in research in 2021. We are excited to welcome new researchers to our Global Research Network and look forward to sharing some of their research with you soon. Our Grants Committee has been reassembled and will be reviewing two upcoming grant proposals during the first few months of 2021. Our Conference Planning Team is also hard at work preparing for an educational and meaningful Virtual Conference during the summer of 2021.

We remain deeply committed to our mission and are hopeful for opportunities to connect again in-person when it is safe to do so.

Best wishes,

Amanda Shanks

President

PURA Syndrome Foundation


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 .