by PURA Syndrome Foundation | Nov 13, 2023 | News, Newsletter
Parents & Caregivers: We need YOUR help to take our research to the next level The Foundation, in partnership with the University of Southhampton in the UK, made a full launch of the Global Patient Registry in 2022. Since then, only 35 registries have been...
by PURA Syndrome Foundation | Nov 11, 2023 | News, Newsletter
We are so excited to introduce Chrissie Brock as our new Siblings Ambassador. After meeting at our 2023 PURA Conference in the UK, Chrissie reached out to volunteer to help the Foundation to fill the role of our Siblings Ambassador. She has spent the past few months...
by PURA Syndrome Foundation | Nov 9, 2023 | News, Newsletter
Did you know that October 23, 2024 will mark the 10th Anniversary of the discovery of PURA Syndrome? We are putting together a year-long celebration with monthly themes so stay tuned to social media and email for more details. Interested in helping? Please...
by Amanda Shanks | Feb 12, 2021 | News
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...
by PURA Syndrome Foundation | Oct 27, 2020 | News
The PURA Syndrome Foundation is pleased to announce the appointment of Amanda Shanks as President of the Board of Directors for a term of three years. Dominic Spadafore, who faithfully served as board president for the last four years, will remain on the Board of...
by Dominic Spadafore | Oct 24, 2020 | News
nnExciting News!I’m glad to be able to announce to you some exciting news at the Foundation!n nThe 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...
