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Advocacy News

See who we’ve met during our travels while advocating for Cystic Fibrosis

Bonnell Foundation CEO, Laura Bonnell speaks at the Rare Action Access Project (RAAP) in Washington, D.C. on November 14th and 15th.

It was an exciting time in Washington, D.C. on November 14th and 15th.  Bonnell Foundation CEO, Laura Bonnell traveled to our nation’s Capital to speak at the Rare Action Access Project (RAAP).
Laura talked about the importance of passing the Rare Disease Advisory Council (RDAC).  She also talked about the concern over the passage of the Prescription Drug Advisory Board (PDAB).  Laura was one of 4 panel members talking about state legislation. She was joined by moderator Patrick Plues, Jason Harris, Anna Hyde and Melanie Lendal.
Other panels addressed:
 * The EPIC Act (solutions to rare patient participation and access to medicaid). 
  * Modernizing the approach to newborn screening and genetic testing
  * Overview of state health issues for 2023 and outlook for 2024
  * Implications of the Inflation Reduction Act (IRA) on rare disease drug development and innovation

Patient and Caregiver Perspectives from the 2023 NORD Breakthrough Summit

Patient and Caregiver Perspectives from the 2023 NORD Breakthrough Summit
We asked those impacted by rare disease to share their experiences and takeaways from the summit.
By Eric Monticello

It’s often said that rare diseases aren’t that rare. And the National Organization for Rare Diseases (NORD) Breakthrough Summit gives patients a chance to see that for themselves.
This year, 900 rare disease community members came together in person to network, share stories and gather information about thousands of rare conditions. CSL, whose medicines treat rare
diseases, attended the summit and shared information about bleeding disorders and policy changes that could benefit the patient community.

What did attendees representing various rare disease communities take away from the summit? We interviewed them to find out.
Click here to read the article.

October 15-17 NORD Summit

Laura attended to meet and listen to rare disease experts, but most importantly to meet other rare disease advocates.  It was a wonderful way to connect. 

October 12th – Celebration of Hope, Grand Rapids

Laura spoke about The Bonnell Foundation and advocacy. The Prescription Drug Advisory Board (PDAB) is a hot topic. The rare disease community does not want it passed, but it sailed quickly through the Senate.  We’ve given amendments that include the patient voice to members of the House.  We’re hoping the House slows it down. 

October 11th – Lansing, Michigan

Laura advocates at the Lansing Capitol.  She testified before the Senate Health Policy Committee, asking Senators to pass the Rare Disease Advisory Council (RDAC). This will give all stakeholders (Insurance, Pharma, patients, parents, doctors, etc). Laura was in good company with the sponsor, Rep. Jason Morgan, Tara Britt, RDII and Carolyn Sheridan with the National Organization for Rare Disorders (NORD). 

Hear Our Science and Innovation Radio Ad

30-second commercial asking for support of Science and Innovation policies:

About the Rare Disease Advisory Council

The Bonnell Foundation, CFRI and CFEN collaborated by making this video that will help you understand what a Rare Disease Advisory Council (RDAC) is all about:

What’s Wrong with ICER?

Sometimes economists can have more control than your doctor about whether you get the medicine that treats your condition.

May is National Cystic Fibrosis Awareness Month

May is National Cystic Fibrosis Awareness Month

National Cystic Fibrosis Awareness Month in May encourages education in the battle against a lung disease affecting more than 30,000 people in the United States.

Cystic Fibrosis (CF) affects more than just the lungs. This genetic disease causes constant lung infections, but it also impacts other organs in the body where mucus builds up.

While there is still no cure for CF, advancements in treatment have made it possible for those with CF to live much longer than ever before. However, they live under the risk of infection and health problems due to CF. A cure is still needed.

CF Task Force Raises Awareness

The Bonnell Foundation: Living with Cystic Fibrosis and Rock CF organized the CF Task Force in January of 2017 to make certain that we were raising awareness as a CF community. Our hope since then has been that lawmakers will use us as a resource when making decisions that will impact people with CF and even people with other chronic illnesses. We meet periodically to discuss our concerns (healthcare, awareness, preexisting conditions and more). We encourage you to get involved. Please shoot us an email at: thebonnellfoundation@gmail.com.

“I am glad to be part of the CF Task Force because we have to stick together as a CF community and raise awareness to local legislators and anyone who will listen.” — Laura Hartson

Advocating For CF In Washington D.C.

Bonnell Foundation president Laura Bonnell and daughter Emily traveled to Washington D.C. March 30th-31st, 2011 to advocate for CF. They visited Rep. Sander Levin’s office and also met with Representatives Gary Peters, Bill Huizenga and John Dingell.

The Bonnell Girls Advocate For CF

The Bonnell girls met with Rep. Gary Peters in August 2010. He joins the CF caucus. Rep. Peters helped pass the Clinical Trials Bill into law. The girls are pictured with U.S. Senators Carl Levin and Debbie Stabenow, who passed the bill too. A huge thank you.

Become an advocate for CF

You can join The Bonnell Foundation to speak out and take action on behalf of Cystic Fibrosis. Fill out our Volunteer Form; it’s a great place to get started, and we’ll contact you with opportunities to help the cause!

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