“We couldn’t have done this without the Salem Oaks team.”

A customer testimonial

COVID-19 caused disruption for many non-profits, even for those of us who predominantly work in a virtual environment.  Barth syndrome is an ultra-rare condition.  We are aware of approximately 150 people diagnosed with Barth syndrome in the US. We typically host a biennial conference on even years but due to the risk of COVID exposure associated with travel we were forced to cancel our events in 2020 and in 2022.  Our conferences provide families with an opportunity to connect face-to-face with others who are facing the same challenges in raising a child with Barth syndrome and for adults who are living with the condition. During these events many of our families are meeting someone else who is living with similar challenges for the first time.  These human connections represent the core of care within our community.  

Early in 2022 we made the decision to host four in person gatherings in the US and two in Europe, because our community is stronger when we are together.  We named the event the Stronger Together World Tour.  It was our desire to provide a similar experience for all those who attended each event.  We wanted to carve out social time but it was also essential to provide educational sessions.  Our goal was to unite families and deepen connections beyond the virtual interactions.  Our parents reported challenges in sharing their lived experience with others.  Kevin Freiert is the host of several podcasts and has a masterful way of giving people the space to feel safe in sharing their experience.   We called upon Kevin and the Salem Oaks team to help us pull together a Story Telling series for each of our events.

Our goal was to empower families with the confidence to share their stories with others. Story telling is an essential aspect of advocacy, whether it was with a stranger, a doctor, a fundraising event, a co-worker, friends and family or with legislators and federal regulatory agencies, the story is what people remember.  The framework of sharing the story changes based upon who you are talking with but at the very core is the lived experience, the story.  What we didn’t expect was the catharsis families would experience by sharing their stories in a safe place with others who just got it.  Each event was unique.  Some people attended more than one event and shared that their story telling experience was different for each event.  By the end of the event the families felt confident in their ability to convey their story in a powerful manner and the connections within the community truly did grow stronger because they were together.  

We couldn’t have done this without the Salem Oaks team.  Our 2022 Stronger Together World Tour Story Telling Workshop was such a hit that we plan to go to the next level with Salem Oaks for a Story Telling 2.0 during our 2023 Stronger Together World Tour.  

Shelley Bowen

Director, Family Services and Advocacy

Barth Syndrome Foundation

Posted by Heather McCullen


Posted in

Heather McCullen

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