BEF, Author at The Boomer Esiason Foundation

March 19, 2019

Video Source: CNN After six months in the hospital and after two double lung transplants, Sarah is finally returning home. Sarah Murnaghan, a ten year old with cystic fibrosis, has been fighting for her life in the hospital for almost two years - in desperate need of...

Boomer: Sarah’s Transplant is a miracle

by BEF

Boomer Esiason Foundation, CF News, Policy

March 19, 2019

Boomer responds to FOX's Sheppard Smith on the news that 10 year old Sarah Murnaghan has received a lung transplant at Children's Hospital of Philadelphia. The Boomer Esiason Foundation sends Sarah and the Murnaghan family our thoughts and prayers. Recently,...

New Infection Prevention and Control Policy from the CF Foundation

by BEF

CF Community, CF News, Policy

March 19, 2019

Because cystic fibrosis puts the airways at risk for lung infection, the Cystic Fibrosis Foundation has an Infection Prevention and Control Policy in place to protect the health of people with CF at all Foundation events, meetings, and any other gathering places. Proven ways to prevent...

The CF Foundation Expresses Concern About Proposed Disability Benefit Changes

by BEF

CF Community, CF News, Policy

March 19, 2019

The Cystic Fibrosis Foundation, on behalf of the CF community, has taken its concerns about a proposed rule that raises difficulty for people with CF to receive disability benefits to the Social Security Administration (SSA). Recently, the SSA released a proposal that would change the way...

Legislation to Expedite Approval of Rare-Disease Drugs Moving Through Congress

by BEF

CF News, Policy

March 19, 2019

Source: Cystic Fibrosis Foundation The U.S. House of Representatives has passed the Expanding and Promoting Expertise in the Review of Rare Treatments Act, better known as the “EXPERRT” Act. Introduced by Reps. Edward Markey (D-MA), Tom Marino (R-PA) and Cliff Stearns (R-FL), the legislation enables expanded consultation...

CF Foundation Kicks Off ‘Make Every Breath Count’ Campaign

by BEF

CF Community, CF News, Policy

March 19, 2019

Volunteers from all over the country will meet with their elected officials in their hometowns this summer as part of Make Every Breath Count, the Cystic Fibrosis Foundation’s annual national advocacy campaign. By participating in Make Every Breath Count, volunteers hope to build support in Congress...

HHS Reduces Insurance Premiums for Pre-Existing Condition Plan

by BEF

CF Community, CF News, Policy

March 19, 2019

The U.S. Department of Health and Human Services (HHS) on May 31 announced new steps to reduce premiums and make it easier for Americans to enroll in the Pre-Existing Condition Insurance Plan. Premiums for the Federally-administered Pre-Existing Condition Insurance Plan (PCIP) will drop as much as...

Clinical Trials Legislation Takes Effect

by BEF

CF News, Policy

March 19, 2019

A new law that allows patients with rare diseases to participate in clinical trials without losing eligibility for public healthcare benefits went into effect yesterday. The bill, known as the “Improving Access to Clinical Trials Act” (IACT), was signed into law in October 2010. Because of...

FDA Panel Not Sold on Personal Genetic Testing

by BEF

CF News, Policy

March 19, 2019

A Food and Drug Administration advisory panel said March 8 that genetic tests directly marketed to consumers should be allowed only under a doctor's supervision. Personal testing, which is mainly available online from firms operating outside traditional medical institutions, can produce ambiguous or misleading results without...

‘Improving Access to Clinical Trials Act’ Passes U.S. House; Heads to President for Signatur

by BEF

CF News, Policy

March 19, 2019

The U.S. House of Representatives passed the "Improving Access to Clinical Trials Act" (I-ACT), in a victory for the Cystic Fibrosis Foundation, its advocates and 120 other health advocacy organizations. The bill, which passed the Senate Aug. 5, now goes to President Obama's desk for his...

Author: BEF

Updates on Sarah Murnaghan and Pediatric Lung Transplant

Boomer: Sarah’s Transplant is a miracle

New Infection Prevention and Control Policy from the CF Foundation

The CF Foundation Expresses Concern About Proposed Disability Benefit Changes

Legislation to Expedite Approval of Rare-Disease Drugs Moving Through Congress

CF Foundation Kicks Off ‘Make Every Breath Count’ Campaign

HHS Reduces Insurance Premiums for Pre-Existing Condition Plan

Clinical Trials Legislation Takes Effect

FDA Panel Not Sold on Personal Genetic Testing

‘Improving Access to Clinical Trials Act’ Passes U.S. House; Heads to President for Signatur

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