Executive Sub Comittee Meeting

Approval of minutes

ACTION:  Representative Murphy made a motion to approve the August 11, 2024, meeting minutes, motion seconded by Maureen Alderman.  Motion passed 3-4.

Ongoing Business

Committees and Taskforces:

Due to her election as Vice-chair, Jackie Foster is joining the executive committee. Governance taskforce to be dissolved and the executive committee will take over governance work moving forward.

Director Barnes presented a template for committee reporting purposes sent out ahead of time for Full Council meetings. A discussion was had for recommendations. This template can be sent out and used for Full Council meetings with Chairs submitting to prior to the Full Council meeting.

A discussion around new members joining the RDAC subcommittee(s). Self-assigning to committees versus members recommending members. We have two new taskforces that will need members. A survey is an option to rank interest of members.
Taskforce members do not need to be Council members. Committees need to be Council members. The Chair and the Executive Director agreed to meet with a proposal for each committee and what is needed for membership.

Full Council Meeting Debrief and Discussion:

The Full Council meeting was well attended, in person and online. The membership, especially the new members were presented with a lot of information. Concerning the completion of governance, the Vice Chair recommended sending a two week reminder for governance documents. The governance documents will be up for discussion by the full council before they are voted on as our governing documents.

Annual Report:

The 2025 annual report is coming due and the Executive Director and the Chair will write a note for the annual report due January 1, 2025. A draft of the annual report will be made available for the Full Council meeting in November. Dr. Tilstra recommended adding a section related to issues the Council anticipates will be coming in the future (looking ahead).

Gene Therapy Taskforce:

Gene Therapy taskforce and the membership were discussed. MAD is requesting that the ESC review the membership. Team roles and perspectives were reviewed, and information will be sent to ESC members for comment. The committee discussed the main goals and potential outcomes of the taskforce.

Executive Director Barnes reported a development in the State related to the taskforce and a recent decision by the newborn screening committee. Rep Murphy raised the question that, given the decision’s potential to have system-wide impact on the rare disease community, should the Council be providing letters of support. Pros and cons were discussed related to providing letters of support for individual rare diseases. Director Barnes will determine if a letter from the Council is warranted in this case and report back to Council leadership.

Governance:

A discussion had regarding rolling the remaining GTF into the ESC. The work that is left is the maintenance and operation. This will be ready for a Full vote in November. The policy committee will review the governance related to their role. Discussion at the next Council meeting and no vote.

Next Steps:

Committee report template sent with November meeting material.
ESC to review focus on the formation and function of taskforces.
Interest survey designed for members joining committees.
Decision from Chair and Executive Director on taskforce and committee membership needs.
Two week governance reminder to Full Council.
Annual report draft to be sent to Full Council with November meeting material.
Prepare for discussion at Full Council regarding governance recommendations.
Review the need for letter of support regarding newborn screening.

Public Comment

None