Capitol Trip to Meet with the Governor
We will never stop advocating for people with CF and rare diseases. The future is determined by all of us — for those who will live beyond us.
Let’s make sure they have fair laws that protect them. That’s what we think about: what will happen when current caregivers pass on? Will our children and their children have laws that will protect them, provide the care they deserve and need?
We dropped into Rep. Mike Mueller’s office (unannounced) to say hello after we met with the Governor. It’s always wonderful to see you Mike. We love that he wants to bridge the gap with both sides of the political aisle, always. We appreciate his honesty and that he fights for the CF community, and rare disease. Rep. Mueller is always open about the fact that his sister has cystic fibrosis. It was great to meet her a few years ago (Madeline Elmhirst), and to talk about how well she’s doing now (after being through so much including transplants). So glad she has a brother like Mike. Mike fights for her, and for us. Thanks for being a fighter for the people. I could go on and on about his leadership, and how we see you as a wonderful human. The Bonnell Foundation works on bipartisan bills. We also work with both sides of the aisle. Rep. Mueller is a Republican and the Governor is a Democrat. Ideas matter, on both sides.
It was a great day to be with this CF and rare disease crew. We met with the Governor Gretchen Whitmer Tuesday morning to remind her about concerns over many bills: 340B, Step Therapy, Co-Pay Accumulator, Prior Authorization, Telehealth, and more. We briefly touched on our concern about the PDAB and getting the RDAC passed by legislators and signed by the Governor.
It was so important for the Governor to hear Emily Schaller of Rock CF talk about how the co-pay accumulator bill continues to impact her, and @Heathertrammell made a please “mom-to-mom” to the Governor to do something about the standoff between BC/BS and Michigan Medicine. Patients could lose coverage if they don’t reach an agreement, and the impact would be brutal for patients and caregivers. Claire Haglund and Wendi Tague touched on the need for fixes in health insurance (they’re with Children’s Hospital of Michigan). Leslie Baldwin talked about the impact on the rare community and the need to work together. Stephen Rapundalo, PhD of MichBio asked the Governor about signing off on the RDAC when it gets to her from lawmakers, and how it needs to be signed off by lawmakers. Dr. Samya Nasr also talked about how the BC/BS and Michigan Medicine contract discussions could impact her patients. Patrick Hardiman of Vertex Pharmaceuticals talked about the importance of science and research, and every parent can agree on this one. We need pharma and new drugs.
We believe we were heard. And we are thankful. This is a reminder that your voice matters. #ADVOCACYMATTERS. Do what you can, big or small. It all matters.
Why We Advocate: The Importance of Access to Efficient, High-Quality Healthcare
Anyone living with a rare disease wants access to care — not just substandard healthcare, but healthcare that will keep them alive and healthy. Sadly, this is often not the case for so many patients.
I am Laura Bonnell, the mother of two daughters with cystic fibrosis. For 30 years, I have advocated for my daughters to ensure they get the care they deserve, and to promote legislation that will assure their basic rights to care.
In Michigan, the RDAC
Representative Jason Morgan reintroduced the Rare Disease Advisory Council (RDAC). See the press release: Morgan Reintroducing Bill Creating Rare Disease Advisory Council – housedems.com
February 24-26th: Everylife Foundation Rare Disease Week on the Hill
Hundreds of advocates (caregivers and patients) gathered in Washington, D.C. to make their voices heard regarding Federal legislation. Our message: support bills that impact the rare disease community. Laura is pictured here with Siri Vaeth who is the Executive Director of CFRI in California. Siri’s daughter has CF.
- Continue to support Federal Biomedical Research funding and public health support (FDA, CDC and NIH).
- Reauthorize the Rare Pediatric Disease Priority Review Voucher (PRV) program at FDA.
- Including Accelerating Kids’ Access to Care Act (AKACA) in the first available legislative package.
- Ask members of congress to join the Rare Disease Congressional Caucus
For more information on these federal issues: https://everylifefoundation.org/rare-advocates/
Pictured: Siri and Laura on the Hill and Everylife group
February was a busy month for the rare disease community
February was a busy month for the rare disease community (a disease/disorder community is considered rare if there are fewer than 200,000 people).
Bonnell Foundation CEO, Laura Bonnell was the keynote speaker at the 2025 Rare Disease Day Gathering: bridging the gaps. Laura shared her CF journey as the mother of Molly and Emily, and as an advocate for the rare and CF community. This is always a fulfilling conference to attend with so many representatives from the rare community, including incredible caregivers and scientists.
Pictured: Dr. Caleb Bupp and Laura Bonnell
Morgan Reintroducing Bill Creating Rare Disease Advisory Council
LANSING, Mich., Feb. 27, 2025 — State Rep. Jason Morgan (D-Ann Arbor) will reintroduce legislation to create the Michigan Rare Disease Advisory Council (RDAC) in honor of Rare Disease Day tomorrow. The purpose of the council is to create a publicly available list of rare diseases and identify the best ways to enhance educational resources, care, treatment and support for those living with rare diseases, their loved ones and their health care providers.
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Rare Disease Advisory Council
The newly constituted Michigan Rare Disease Advisory Council (MI RDAC) met in early October 2024 and began its mandate as an advisory body that provides Michigan’s rare disease community with a stronger voice in state government.
Read more
Time to pass HB 4167: The Bonnell Foundations Laura Bonnell talks with Greg Bowman on WWJ.
Future of Medicine is in the Hands of the Next Generation of Medical Students
“The future of medicine is in the hands of the next generation of medical students I have come to know. They are bright stars, and I am confident in their medical careers” says Laura Bonnell, the CEO of the BonnellFoundation: Living with cystic fibrosis. “I was honored to meet Atef Choudhury and Naim Mashni when they volunteered to raise awareness about The BonnellFoundation. The co-founders of Cure Found, a student organization that originally started at MSU, asked me to speak about our Foundation to approximately 50 of their pre-medical/pre-health undergraduate students who are committed to CF and Cure Found. Atef and Naim are organized, smart and doing wonderful work for the CF community and pre-medical/pre-health students.” Thanks to their mentor at MSU, Dr. Ryan Thomas for the introduction (he’s also on The Bonnell Foundation Advisory Board).
Chronically Ill in a War Zone
by ROBIN SCHWARTZ
An Israeli mother of three shares how she’s coping with cystic fibrosis amid the war.
