Barth Syndrome Foundation Town Hall Meeting Summary
Barth Syndrome Foundation hosted our first Town Hall meeting on June 11, 2019! The purpose of this meeting was to highlight our success in furthering the mission of BSF in education, advances in research, and finding a cure. The meeting was intended to be a conversation between our team and the BSF community.
Shelley Bowen, the Director of Family Services and Advocacy, addressed news regarding Family Services & Advocacy. BSF has created a new emergency management document that includes the ICD 10 diagnostic code as well as symptom-specific information that will help healthcare providers to better initiate immediate and necessary care for people affected by Barth syndrome. The emergency document will be held within the new medical binder called the “Care Management Toolbox”.
- Care Management: Emergency Department – “I wish I had something I could just hand to the doctors that says DO THIS!”
- Care Management Toolbox
- Includes the Medical Binder (fillable PDFs for families to complete and share with their healthcare provider: medical records forms, health history, contacts, lab test results)
- Coming soon!: Barth Syndrome by System – An information resource regarding body system functions
- Will be available at https://www.barthsyndrome.org/barthsyndrome/familyresources/
Behind the Scenes at BSF.
BSF recently transitioned to a new management/website system, which has created a new look and brand for BSF. This coincides with an updated email and fundraising platform.
- New look and feel across BSF communications platforms
- BSF Beat
- NEW newsletter for BSF community – distributed May 2019
- Contact email@example.com for your snail mail copy
- E-News (Find archived digital versions here)
- News from Executive Director, research brief, advocacy alerts, donation opportunities, Family Heartbeat Newsletter
- BSF is going green to communicate with our community more frequently and cost-effectively
- Sign-UP @ barthsyndrome.org/gogreen
- New Fundraising Tool Coming at the end of July!
- Create your own personal fundraising page – Willing to be a volunteer to test? Contact Lynda Sedefian
- Sneak peek http://teambarth.barthsyndrome.org/2019
Matthew Toth, BSF Science Director, reviewed updates in Research and spoke about BSF’s first Portfolio Review meeting scheduled for June 19, 2019 where research priorities and potential translational opportunities for clinical trials will be discussed.
- Portfolio Review meeting included BSF Board Members, SMAB Members, and external reviewers
- 3 Presentations on near-term clinical trials in Gene Therapy, Enzyme Replacement Therapy, and ALCAT1 inhibitors
- Goal: What can BSF do to best support near-term clinical trials in these three areas?
Finally, Emily Milligan, Executive Director, discussed the 2019 Strategic Vision for BSF. She talked about many new and exciting meetings where BSF was present within the last year, as well as the new goals of the foundation and looking ahead.
- Advocacy in Action – Multiple meetings with FDA, NIH, and peer organizations, promoting further advocacy for Barth syndrome and the BSF Community
- BSF Strategic Plan (2017-2020)
- Expand science/medicine program to encourage finding treatments & cure, enhance capacity of BSF to meet mission, build confidence & trust in BSF
- BSF Impact Assessment & Organizational Goals 2019
- Of the many metrics, BSF is improving our communication platforms, refining our research strategy for maximum impact on mission, & cultivating new cross-sector partnerships
Following each presentation, there were Q&A poll questions provided by each team member. Many of these questions addressed opinions of BSF’s current happenings, as well as involvement and support from the foundation. Community members asked questions about the new and exciting fundraising opportunities within our new platform, information about the 2020 Conference, and researcher interest in Barth syndrome.
For those who were not able to attend, the recording of the Town Hall Meeting is now available!
Matthew J. Toth, PhD
Director, Family Services & Advocacy