CF Foundation Participates in Precision Medicine Initiative Summit Hosted by the White House

On Feb. 25, members of CF Foundation leadership and advocates from the CF community joined President Obama, National Institutes of Health (NIH) Director Francis S. Collins, Food and Drug Administration (FDA) Commissioner Robert M. Califf, White House staff and other stakeholders at the Precision Medicine Initiative Summit (PMI), hosted by the White House.

March 9, 2016 | 3 min read

The summit gave people the chance to learn more about the initiative and receive a one-year update of the progress being made in the field of precision medicine. During round table discussions, participants were given the opportunity to discuss some of the strategies behind the efforts to accelerate this new era of medicine. President Obama spoke passionately about continuing his administration's commitment to advancing specialized care for the people who need it the most.

During the initial launch of the initiative last year, and during the 2015 State of the Union address, President Obama praised the progress made in treating cystic fibrosis as a model for the types of treatments that can be made available through precision medicine. The President shared the story of Bill Elder Jr., a young man who has benefited from genetically-targeted CF treatments, as an example.

Staff and advocates attend White House, invite-only event.
(From left to right) Dr. Preston Campbell, Dr. Bob Beall, Sean Young and Katrina Young get ready to attend the Precision Medicine Initiative Summit, an invitation-only event hosted by the White House.


Cystic Fibrosis Foundation President and CEO, Preston W. Campbell III, M.D., was among the guests invited to this prestigious summit. In addition, longtime CF Foundation community advocate, Katrina Young, and her 17-year-old son with CF, Sean, joined them. Leading up to the event, Young had written a letter to the White House thanking President Obama and his administration for their role in precision medicine and highlighting the impact that it has made on Sean's health.

Francis S. Collins, M.D., Ph.D., director of the National Institutes of Health (NIH), attended the summit to announce the NIH's latest efforts to implement the PMI Cohort Program, which they are spearheading. Researchers plan to collect and analyze the health and genetic data of more than one million Americans in order to better understand and treat diseases. By the end of 2016, the NIH hopes to have 79,000 volunteer participants enrolled in the cohort.

The future of precision medicine will enable health care providers to customize treatment and prevention strategies to an individual's unique characteristics, including their genome sequence, microbiome composition, health history, lifestyle and diet.

The cystic fibrosis story and the Cystic Fibrosis Foundation continue to be a model for best practices in precision medicine. This includes the tools that we use in our pursuit of individualized treatment, including the cystic fibrosis patient registry, our Quality Improvement Initiative, the methods we use for patient engagement and the CF Therapeutics Development Network.  Through these initiatives, the Cystic Fibrosis Foundation engages people with CF as partners in research and in the continual improvement of care quality.

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