Stronger Together World Tour (Boston/ Fitchburg)
Our mission is “Saving lives through education, advances in treatments and finding a cure for Barth syndrome.” COVID-19 has not only changed the world, but it has caused us to think creatively about new ways we can achieve our mission. BSF’s “#StrongerTogether World Tour” (#STWT) intends to expand the critical lifeline of the BSF community through regional events that are geographically accessible in these challenging times. Barth families, researchers, and healthcare providers will unite in strategic locations across the world for our common cause: to build and strengthen relationships through a shared experience of education, research, and camaraderie. We educate healthcare providers and families to learn new ways in which research and clinical advancements have the potential to allow those with Barth syndrome to live longer and fuller lives. We deepen researchers’ resolve to end this dreadful disease by introducing them to the people who will benefit from their discoveries. And we are creating opportunities to fortify the relationships between families so they can support each other across the journey of living with or caring for someone with Barth syndrome.