Full Council Meeting

Motion to approve

Motion to approve July 27th meeting minutes by Rep. Liz Reyer, and seconded by Karl Nelsen, motion unanimously passed by roll call vote, with 13 in favor and 5 members absent.

Votes

• Maureen Alderman Voted: Absent
• Soraya Beiraghi, DDS, MSD, MS Voted: Absent
• Dr. Arthur Beisang, MD Voted: Approve
• Rae Blaylark Voted: Approve
• Sen. Julia Coleman Voted: Absent
• Angela Cowen, ICSW Voted: Approve
• Jackie Foster, MPH, RN, OCN Voted: Absent
• Amy Gaviglio, MS CGC Voted: Approve
• Kerry Hansen, RN Voted: Approve
• Barbara Joers Voted: Absent
• Sen. Kelly Morrison Voted: Approve
• Rep. Tom Murphy Voted: Approve
• Karl Nelsen, PA-C Voted: Approve
• Dr. Paul Orchard, MD Voted: Approve
• Rep. Liz Reyer Voted: Approve
• Kris Ann Schultz, MD Voted: Approve
• Dawn Stenstrom Voted: Approve
• David Tilstra, MD Voted: Approve

Mission Moment

State Fair Debrief: Amy Gaviglio invited council members who participated in the State Fair day to provide their experience and feedback from the community during that time.

1. Karl Nelsen, Dave Tilstra, Rep Liz Reyer, Rep Tom Murphy, and Erica Barnes were the council members who attended the state fair. Each of them shared their personal stories and the meaning behind their attendance at the State Fair.
2. Erica Barnes, Executive Director, shared that they kept a list of 28 different rare disease diagnosis, whether they were patients, family members or caregivers of that disease.

Executive Director Update

Erica Barnes updated the council on the status of the supplemental budget request

• Erica Barnes reported the budget that was resubmitted to the Governor’s office from the previous legislative session
• Erica is working with the Governor’s office for an appropriation under the category of “technical fix”

Committee Updates

Policy Committee

Dawn Stenstrom provided updates related to activities being carried out by the policy committee.

Motion: Motion was made by Karl Nelsen and seconded by Kerry Hansen to accept the decision criteria established by the policy committee when identifying legislative priorities. The motion unanimously passed by roll call vote, with 13 in favor and 5 members absent.

Votes

• Maureen Alderman Voted: Absent
• Soraya Beiraghi, DDS, MSD, MS Voted: Absent
• Dr. Arthur Beisang, MD Voted: Approve
• Rae Blaylark Voted: Approve
• Sen. Julia Coleman Voted: Absent
• Angela Cowen, ICSW Voted: Approve
• Jackie Foster, MPH, RN, OCN Voted: Absent
• Amy Gaviglio, MS CGC Voted: Approve
• Kerry Hansen, RN Voted: Approve
• Barbara Joers Voted: Absent
• Sen. Kelly Morrison Voted: Approve
• Rep. Tom Murphy Voted: Approve
• Karl Nelsen, PA-C Voted: Approve
• Dr. Paul Orchard, MD Voted: Approve
• Rep. Liz Reyer Voted: Approve
• Kris Ann Schultz, MD Voted: Approve
• Dawn Stenstrom Voted: Approve
• David Tilstra, MD Voted: Approve

Motion: 2024 legislative agenda

Motion: Motion was made by Kerry Hansen and seconded by Paul Orchard to accept the proposed 2024 legislative agenda. The motion unanimously passed by roll call vote, with 13 in favor and 5 members absent.

Executive subcommittee-

Amy Gaviglio provided updates related to activities being carried out by the Executive committee.

Votes

• Maureen Alderman Voted: Absent
• Soraya Beiraghi, DDS, MSD, MS Voted: Absent
• Dr. Arthur Beisang, MD Voted: Approve
• Rae Blaylark Voted: Approve
• Sen. Julia Coleman Voted: Absent
• Angela Cowen, ICSW Voted: Approve
• Jackie Foster, MPH, RN, OCN Voted: Absent
• Amy Gaviglio, MS CGC Voted: Approve
• Kerry Hansen, RN Voted: Approve
• Barbara Joers Voted: Absent
• Sen. Kelly Morrison Voted: Approve
• Rep. Tom Murphy Voted: Approve
• Karl Nelsen, PA-C Voted: Approve
• Dr. Paul Orchard, MD Voted: Approve
• Rep. Liz Reyer Voted: Approve
• Kris Ann Schultz, MD Voted: Approve
• Dawn Stenstrom Voted: Approve
• David Tilstra, MD Voted: Approve

Motion: authorize the executive subcommittee to identify needed areas of expertise for which to create council member ad hoc appointments

Motion: Motion was made by Dawn Stenstrom and seconded by Kerry Hansen to authorize the executive subcommittee to identify needed areas of expertise for which to create council member ad hoc appointments. The motion unanimously passed by roll call vote, with 13 in favor and 5 members absent.

Votes

• Maureen Alderman Voted: Absent
• Soraya Beiraghi, DDS, MSD, MS Voted: Absent
• Dr. Arthur Beisang, MD Voted: Approve
• Rae Blaylark Voted: Approve
• Sen. Julia Coleman Voted: Absent
• Angela Cowen, ICSW Voted: Approve
• Jackie Foster, MPH, RN, OCN Voted: Absent
• Amy Gaviglio, MS CGC Voted: Approve
• Kerry Hansen, RN Voted: Approve
• Barbara Joers Voted: Absent
• Sen. Kelly Morrison Voted: Approve
• Rep. Tom Murphy Voted: Approve
• Karl Nelsen, PA-C Voted: Approve
• Dr. Paul Orchard, MD Voted: Approve
• Rep. Liz Reyer Voted: Approve
• Kris Ann Schultz, MD Voted: Approve
• Dawn Stenstrom Voted: Approve
• David Tilstra, MD Voted: Approve

Public Comment

Molly Noenen formally introduced herself and shared her personal stories as they pertain to rare diseases. She expressed her interest in becoming more involved with the RDAC.

Break

Cultivate Strategy Presentation

Introductions and facilitated activities:

Brigid and Sherry gave the council a formal introduction to Cultivate Strategy.

Cultivate Strategy presented on Governance Models and made recommendations to the Council related to actions the Council can take to ensure compliance with all processes and procedures required of a state agency. Council members provided input and feedback with the following next steps identified:

• Council delegates to a committee to adapt governance documents to finalize governance documents
• Council trains themselves and any new appointees.
• Council and staff carry out strategic planning.