Barth Syndrome Foundation
Updates from Barth Syndrome Foundation
Barth Syndrome Foundation

 

March 31, 2020

To our friends, families, and colleagues around the world,

First and foremost, I hope that you and your family are safe, staying home and healthy as possible. The global COVID-19 pandemic has literally upended our lives causing a halt to our routines, loss of work for many, and physical isolation for us all. Our children – big and small  – are struggling to find structure and support in the absence of school friends, teachers and activities. Some families in the BSF community are being forced to live separately while one parent works and one parent must care for an at-risk child or family member. To doctors and nurses around the world, we thank you for serving on the frontlines to help us through this world crisis.

Unfortunately, we have learned that efforts to stop the spread of the virus, particularly in Europe and the United States, are taking longer than many world health leaders originally anticipated. Given the baseline immunocompromised state and cardiovascular issues in our Barth syndrome children and adults, we consider our community to be extremely vulnerable and high-risk. Despite our hope that the situation would improve, our priority is always to first protect and support our Barth syndrome community.

As a result, for the sole reason of protecting those that are most vulnerable, we have decided to postpone the 2020 Conference and reschedule it for 2021.

Obviously, there is a great deal of planning behind the scenes. However, we wanted you to be informed of this decision in real-time. Specifics of the 2021 Conference are being worked out and will be shared with you as soon as they’ve been finalized.

Now more than ever we recognize that BSF and its affiliates are a global family. If you are receiving this email you are a part of that family. Whether you are a parent, a scientist, a person with Barth syndrome, a clinician, a grandmother, a member of the FDA or a friend, we are in this together. No matter where you live and what challenges you are facing, please know that we are here for you. The BSF team and members of our community have rallied together to offer new support and community resources including a free online yoga class, daily age-focused support groups, a virtual happy hour, show and tell for kids, a weekly roundtable and frequently updated medical guidance related to COVID-19 and Barth syndrome. In addition, we are here to talk, to connect, to listen and to help troubleshoot as we work together one day at a time. The BSF website, barthsyndrome.org, has all of this information and will also be the best place to check for updates about Conference 2021.

While we are, like you, very disappointed about the need to postpone this summer’s conference, we know that the spirit of our community will hold us together during this time. We also recognize the importance, particularly after this period of social distancing, of meeting together again in person sooner than later, which is why we feel strongly that we cannot wait until 2022 to meet as a community.  In the meantime, we remain tireless and committed to continuing to pursue BSF’s mission to save lives and end suffering caused by Barth syndrome.

Stay well, friends, and be in touch.

#BARTHSTRONG

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Emily Milligan, MPH
BSF Executive Director

 

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