CF Foundation Announces New National Advocacy Chairs

Marissa Benchea and Jeremy and Rachel Olimb to lead the Foundation’s volunteer advocacy base into a new chapter of CF

| 5 min read

The Cystic Fibrosis Foundation today announced the selection of Marissa Benchea, an adult with CF, and Jeremy and Rachel Olimb, parents of three sons with CF, as its new National Advocacy Committee co-chairs. They will succeed past co-chairs Jaci and Drew Strube, parents of a son with CF, and Chad Riedy, and adult with CF, who have served since 2018. 

“We are thrilled for Jeremy, Rachel, and Marissa to lead our advocacy base of passionate and dedicated volunteers,” said Mary Dwight, senior vice president and chief policy and advocacy officer of the Cystic Fibrosis Foundation. “Their contributions to the community, as well as their immense dedication to our mission, will only serve to strengthen and energize our program as we continue to see an evolution of what it looks like to live with cystic fibrosis.”

As National Advocacy Committee co-chairs, Benchea and the Olimbs will be key ambassadors in informing the Foundation’s policy priorities, spearheading advocacy campaigns, and expanding the community of advocates across the country as the Foundation continues to chart its course into a new era of cystic fibrosis. 

About Marissa Benchea

Marissa Benchea, an adult with CF.
Marissa Benchea, an adult with CF.

Diagnosed with cystic fibrosis at birth and currently living in southern Louisiana, Benchea and her family have been involved in the Foundation through Great Strides since her diagnosis. Benchea was deeply involved with the Foundation’s Tennessee Chapter, serving as chapter board president and advocacy co-chair before moving to southern Louisiana in 2018. She is a ROSE UP planning committee co-chair, Adult Advisory Council alumna, 2014 Alex Award winner, 2015 (Tennessee – Nashville) and 2020 (Louisiana – New Orleans) CF Star Award winner, March on the Hill participant, and a CF Foundation Compass Advisory Board alum. Outside of her work with the Foundation, she engages with the CF community on an online exercise and wellbeing platform.

"I am honored to serve as the National Advocacy co-chair alongside Jeremy and Rachel Olimb to support and advance the mission of the CF Foundation through our advocacy efforts,” said Benchea. “As an adult living with cystic fibrosis, I have seen firsthand how important it is to share my story with my elected officials and I hope I can invigorate more adults to take part in advocacy. We are stronger together as a community when we share our unique stories about life with CF, and the hurdles that we encounter accessing affordable and quality care."

About Jeremy and Rachel Olimb

Rachel and Jeremy Olimb, parents of children with CF.
Rachel and Jeremy Olimb, parents of children with CF.

From Gilbert, Arizona, the Olimbs are parents to two sons with cystic fibrosis, Asher and Beck, and a son, Paxon, who lost his battle with CF shortly after birth. Since Asher’s diagnosis, the Olimbs have been active with the Foundation’s Arizona Chapter, fundraising through Great Strides and Arizona’s 65 Roses and Wine Gala, and attending March on the Hill since 2016. In addition, the Olimbs have shared their story at various Foundation events, including the 2019 Volunteer Leadership Conference. Jeremy is executive pastor and Rachel is community life director at Redemption Gilbert, a multi-congregational church. 

"Advocacy has been so empowering for us as parents of children with cystic fibrosis,” said Jeremy Olimb. “So much of dealing with CF is playing defense. Defending against infection, against insurance changes, against progression of the disease, against discouragement and frustration. Advocacy has given us a powerful tool to push back and be on offense: our voice. We have been commissioned to speak out on behalf of our community in a way that has put control back in our hands. Being asked to help lead this community is a huge honor and we hope that we can empower the next wave of advocates to use the powerful voice they have been given."

About Advocating With the CF Foundation

As part of the Foundation’s mission to cure cystic fibrosis and ensure that all people living with CF have access to a cure, the CF Foundation, alongside the cystic fibrosis community, advocates for policies and programs that promote access to highly specialized CF care and advance research and drug development. 

In 2021, volunteer advocates took action to call on lawmakers to support policies that protect the interests of the CF community, including COVID-19 relief, vaccine allocation, and support for state-level CF programs. In total, the community sent nearly 10,000 messages to members of Congress, met with more than 50 first-term Congressional offices, and continued building their networks locally to expand the advocacy base across the country. 

The Foundation also serves as the leading patient voice in a broad coalition advocating for the PASTEUR Act, which aims to revitalize the global marketplace for novel antibiotics. Recently, more than 160 advocates, including more people living with cystic fibrosis than ever before, raised their collective voices to advocate for the PASTEUR Act during the Foundation's 15th annual March on the Hill. In addition, more than 1,400 community members reinforced their message by participating in the fourth annual Online Day of Action. Through these focused efforts over the last two years, we made a difference by adding almost 20 co-sponsors to the bill.

Interested in becoming an advocate? Find out more about the Foundation’s advocacy work on cff.org

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About the CF Foundation | Advocacy
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