Rare Disease Advisory Council (RDAC) with Rep. Jason Morgan and Dr. Stephen Rapundalo

Living With Cystic Fibrosis

The Rare Disease Advisory Council, (RDAC) has passed in at least 25 states so far. This is a bi-partisan effort to give voice to people and their families who are living with a rare disease. We're talking about 7 thousand plus rare diseases, which include cystic fibrosis. The RDAC would be housed in Michigan Department of Health and Human Services.

The Bonnell Foundation, along with MichBio, National Organization of Rare Disorders, RDII and a coalition of rare disease advocates (in Michigan) have been working to get the RDAC passed for years.

A broad overview: In 2020 the RDAC began as Bill 5465, and didn’t make it very far. Then in 2021 the coalition, The Bonnell Foundation, RDII, NORD and Dr. Rapundalo of MichBio our bill sponsor, Representative Cara Clemente, attempted to get Bill 4654 passed, but it didn’t make it through the Senate Health Policy Committee due in part to some misunderstanding about the RDAC. Our thanks to Rep. Clemente for getting us started.

The bipartisan bill, 4167, got new life when Rep. Jason Morgan became the bill’s sponsor. A first time Representative, Jason Morgan has come with enthusiasm, knowledge, and his personal story of life with Becker’s Muscular Dystrophy. We’re very hopeful this bill will pass the Senate Health Policy committee in the Fall, continue to the entire Senate, and get to the Governor’s desk to be signed. The appropriation for this bill is $200,000.

RDAC will simply give us a voice. It will include 21 people who represent the insurance companies, pharma, social workers, doctors, patients, nonprofits, geneticists, nurses, and the bio industry.

We encourage you to contact your members in the Senate (on the Senate Health Policy Committee) and encourage them to pass this bill.

Contact members of the Senate Health Policy Committee: https://committees.senate.michigan.gov/details?com=HLTHP&sessionId=15

To contact Rep. Jason Morgan: [e-mail]

To contact Dr. Stephen Rapundalo at Michbio: [e-mail]

Contact and thank Rep. Christine Morse for getting the appropriations of $200,000 for RDAC: [e-mail]

Please consider making a donation: https://thebonnellfoundation.org/donate/

The Bonnell Foundation website: https://thebonnellfoundation.org

Bonnell Foundation email: [e-mail]

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Genentech: https://www.gene.com

Viatris: https://www.viatris.com/en

Rep, Jason Morgan's bio:

State Rep. Jason Morgan is serving his first term representing the 23rd House District, which comprises Ann Arbor, the city of South Lyon, Superior Township, Salem Township, and parts of Plymouth, Northville, Lyon, and Ann Arbor Townships.

The son of a commercial fisherman and school lunch aide, Rep. Morgan was raised in Pinconning. By working part-time and thanks to state and federal student aid, Rep. Morgan worked his way through college as a first-generation college student, earning a bachelor’s degree in political science from Northern Michigan University. He later earned a master of public administration degree from the Ford School of Public Policy at the University of Michigan.

Rep. Morgan served as a Washtenaw County Commissioner, representing Burns Park and Central Ann Arbor. He was elected chair of the board in 2019 and served as the county’s first-ever LGBTQ chair. In addition to his leadership in Washtenaw County, he served as a Northern Michigan University trustee, having been appointed by Gov. Gretchen Whitmer, and is a service member of the U.S. Coast Guard Auxiliary.

Over the last 10 years, Rep. Morgan has worked in various leadership positions in the community. He worked as the constituent services director to Michigan Secretary of State Jocelyn Benson, district director to Congresswoman Debbie Dingell, special advisor to Congresswoman Haley Stevens, transition director to Congresswoman Elissa Slotkin, director of government and community relations at Washtenaw Community College, aide to Congressman John Dingell, working as the congressman’s liaison to Washtenaw County and managing education-related casework for Michigan’s 12th District, and aide to Congressman Bart Stupak and Michigan Senate Minority Leader Michael Prusi.

Rep. Morgan’s passion is serving the community, with a particular focus on addressing economic and social inequality, LGBTQ rights, access to quality public education, transportation and infrastructure, and protecting the health of our environment. He brings these passions with him to Lansing as he serves his district.

Please like, subscribe, and comment on our shows, wherever you get your podcasts.

Please consider making a donation: https://thebonnellfoundation.org/donate/

The Bonnell Foundation website:https://thebonnellfoundation.org

Email us at: [e-mail]

Thanks to our sponsors:

Vertex: https://www.vrtx.com

Viatris: https://www.viatris.com/en