|
After the last 15 months of isolation, the first International Myhre Syndrome Foundation Virtual Conference held July 10-11, 2021 was just what our Myhre community needed. For two days, over 150 Myhre families, researchers and healthcare providers from 19 countries connected through cyberspace to hear 21 speakers on topics as varied as genetic causes, caregiver stress and the unique cardiovascular features of the syndrome.
But the real “heart” of Myhre was seen early Saturday morning as computer screens turned on for a Virtual Coffee Hour. Participants as far as Brazil, the Netherlands, Scotland and North America crossed time zones to share an hour of caffeine and connection. For some, who had only recently received the diagnosis, it was the first time seeing the familiar “Myhre face” smiling back at them. One mom, teary-eyed with recognition, bounced her baby on her lap and shared how overwhelmed she was to see Myhre teenagers and adults, imagining for the first time a hopeful future for her son.
Read more of Maia Aziz’s wonderful article on the first MSF Virtual Conference here.
|
