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June
- Boomer Esiason Continues his Fight Against CF
- Updates on Sarah Murnaghan and Pediatric Lung Transplant
- Jerry Cahill presented with the Jacoby Angel Award
- Boomer: Sarah’s Transplant is a miracle
MayApril- May is CF Awareness Month!
- Mamaroneck Flowers and BEF Team Up
- Gunnar Esiason: The Face Behind BEF
- Phase 2 Study of Kalydeco and VX-661 Shows Promising Increases in Lung Function
- One Year Post Transplant: Where is Jerry today?
- New Infection Prevention and Control Policy from the CF Foundation
- The CF Foundation Expresses Concern About Proposed Disability Benefit Changes
MarchFebruary
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DecemberNovember
- 2012 Champions for Charity
- Jerry Cahill, 56-Year Old CF Survivor and Athlete, Featured on CBS’s Courage in Sports
October- NHLBI has Launched a Program on Early Cystic Fibrosis Lung Disease
- Team Boomer’s First Year in the Bank of America Chicago Marathon was a Success
- CFF and Walgreens Team Up
- A Heroic Group of Women Triumphing over Cystic Fibrosis
September- Congratulations to the 2012 2nd Quarter Recipients of the BEF Scholarship
- Archbishop John Hughes Council #481 to host a Disco Night BEF Fundraiser
- Boomer’s Still Battling Cystic Fibrosis
- Congratulations to the 2012 Recipients of the Scholarship of the Arts
- FDA Advisory Committee supports the use of Novartis inhalation powder, Tobramycin
- Congratulations to Courtney Robinson, 2012 Rimington Trophy Scholarship Winner
August- Sabrina Smith Walker, a Club CF Participant, is In the News
- Congratulations Emily Nickels and Clayton Roll, 2012 Exercise for Life Scholarship Winners
- Congratulations to the 2012 Rosemary Quigley Scholarship Recipients!
- Gene Network Restores Cystic Fibrosis Protein Function
- Congratulations to Olivia Burke, the most recent recipient of the Bonnie Strangio Scholarship
- Additions have been made to the You Cannot Fail store!
July- Vertex Receives European Approval for KALYDECO™
- Jerry Cahill featured in Everyday Health
- Team Boomer Website
- Boomer’s Cystic Fibrosis Run to Breathe
- 3 Months Post-Transplant, Jerry Cahill will Run to Breathe
- Barron helps kids with Cystic Fibrosis Climb the “Poor Man’s” Everest
June- Final Results from Phase 2 Combination Study of Kalydeco and VX-809 Show Significant Improvements
- Legislation to Expedite Approval of Rare-Disease Drugs Moving Through Congress
- BEF Releases New Wind Sprint on Working Out While Traveling
- PTC Therapeutics Announces Promising Results from Phase 3 Trial of Ataluren
- BEF Announces ‘You Cannot Fail… You are the Hero of Your Own Story’ Scholarship for CF Students
- June Deadlines Near for Five CF Scholarships
- CFChef Announces New Recipe Contests for 2012
May- A Letter From Boomer: Causes for Celebration
- New Podcast: Bobby Bebber on Overcoming All Obstacles with CF
- Progress Made on Cayston® Supply Challenges, CFF Reports
- Concentrated Saline Therapy Not Effective in Young Children with CF, Study Finds
- FDA Approves New Drug Application for Digestive Care’s PERTZYE
- Double-Lung Transplant Has ‘Humbled Me Dramatically,’ Cahill Says
- Online CF Quiz from Gilead Sciences Tests Knowledge, Supports BEF
- BEF Expands Amazon Storefront to Include More ‘You Cannot Fail’ Merchandise
- Second Annual NY Yankees Celebrity Softball Event to Benefit BEF
- Application Deadline for Scholarship of the Arts is May 16
- NYRR Opens Registration for 2012 Boomer’s CF Run to Breathe
- Vertex Reports Promising Interim Results for Phase 2 Trial of Kalydeco and VX-809
- Charity Navigator Awards BEF Second Consecutive Four-Star Rating
- ‘You Cannot Fail’ Book Now Available on Amazon.com
- Tickets on Sale Now for 2012 Refi Rock Spring Fling!
- Documentary on Eva Markvoort to Air May 3 on Oprah Winfrey Network
- New Facebook Tool Allows Members to Share Organ Donor Status
- Two Weeks Post-Transplant, Jerry Cahill Speaks Out on Organ Donation, CF Awareness Month
April- ‘Donate Life Month’ Takes on New Meaning with Jerry Cahill Lung Transplant
- New Website Offers Insight on Cystic Fibrosis Gene Mutations
- New Wind Sprint: Club CF Is Valuable Online Resource for CF Community
- Boston College Club Lacrosse Teams Compete to Fight CF
- Maryland Football ‘Lift for Life’ Event to Support BEF and CF Community
- Atlantic Cup Sailing Race to Benefit BEF and CF Community
- April 17 Deadline Approaches for CFCareForward Scholarship
- Celebrate ‘Donate Life Month’ By Registering to Become an Organ Donor
March- BEF Launches Online Shopping Cart Featuring ‘You Cannot Fail’ Merchandise
- New Podcast: Rick Lerz One Year After a Double-Lung Transplant
- Team Boomer Hits the Streets at NYC Half-Marathon
- Hoops and Hops: Check Out the Photos
- PMD Healthcare Giving Away Spiro PDs for World Asthma Day
- iTunes Offers App for CF Wind Sprint Video Series
- New CF Wind Sprint Looks at Transitioning from College to the Career World
- FDA Approves New Enzyme Therapy for People with CF
February- New CF Wind Sprint Looks at Transitioning from High School to College
- Rimington Trophy Scholarship Established to Support Students with CF
- Gilead Sciences Working to Address Supply Shortage of Cayston
- PMD Healthcare Launches Personal Spirometer To Monitor Lung Function
- New CF Wind Sprint Looks at Transitioning from Pediatric to Adult CF Care
- BEF Awards ‘Sacks for CF’ Scholarships to Outstanding Students with Cystic Fibrosis
- Sales of Team Boomer ‘Vintage’ Tees to Benefit Fight Against CF
January- FDA Approves KALYDECO™; Vertex to Begin Shipments Immediately
- Rimington Trophy Presented to ‘Unquestioned Leader’ of Michigan Football Team
- New Podcast: Colleen Caul’s ‘Run for Roses’
- Vertex Planning Additional KALYDECO™ Clinical Trials in 2012
- BEF Establishes Gunnar Esiason Scholarship Fund at Boston College
- Boomer Esiason to Co-Host ‘Live! with Kelly’ Show on January 11
- Rimington Trophy to be Presented to Michigan’s Molk on January 14
- Help Moganko Meet the Muppets and Boost CF Awareness
- What’s Your New Years Resolution? Want to Exercise More? Join Team Boomer!
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December
- Sydney Esiason Discusses Being a CF Sibling
- 7th Annual Berkeley College Charity Car Show Raises More Than $25,000 for BEF
- Kalydeco (VX-770) Available to People with Critical Medical Need
- Mannitol Shown to Improve Lung Function When Added to Standard CF Therapy
- FDA Grants Priority Review for KALYDECO™ from Vertex Pharmaceuticals
- New CF Wind Sprint Demonstrates Exercises with Kettlebells
- Help Us Make a Difference in the Cystic Fibrosis Community
- YOU CANNOT FAIL Book and Merchandise Available Online, Just In Time for Holiday Gift Giving
- Michigan’s David Molk Named Recipient of 2011 Rimington Trophy
- New Podcast: Josh Mogren on Moving Forward After Losing a Sibling to CF
November- New Clues for Improving Antibiotics for Tolerant Bacteria
- How CF-Related Diabetes Differs from Types 1 and 2
- Genzyme and CFFT Announce Collaboration to Discover New CF Drugs
- December 15 Deadline Approaching for BEF Academic Scholarship
- Boomer Esiason Foundation Unveils New Logo for Team Boomer Athletic Program
- Team Boomer Opens Registration for 2012 NYC Half-Marathon
- Abbott Announces Winners of ‘CFChef Challenge’ Recipe Contest
- Team Boomer Marathoners Raise More Than $500,000 to Support CF Community
- CBS New York Features Team Boomer in Marathon Coverage
- New York Times Article Features Team Boomer Marathoner
- BEF Launches YOU CANNOT FAIL Campaign with Sale of Inspirational Book by Jerry Cahill
- Boomer’s Team Triumphs in Fordham Basketball Scrimmage
- New England Journal of Medicine Features Study of Kalydeco (VX-770)
October- Check Out the Photos from the 2011 Refi Rock Halloween Event
- Thirty Outstanding Students with CF to Receive ‘Sacks for CF’ Scholarship
- Vertex Applies to FDA for Priority Review, Approval of VX-770
- New Cystic Fibrosis Wind Sprint Demonstrates Reaching the Back with a Percussor
- Team Boomer Marathoner Qualifies for 2012 Olympic Trials
- Boomer Esiason to Host CF Education Event in Philadelphia
- NYRR Highlights Team Boomer Marathoner with CF
- Agile Sciences Gets NIH Grant to Study Treatment for Lung Infections
- FDA Requests Additional Study of Arikace®, Insmed Says
September- New Book on Ironman Triathletes Highlights Athlete with CF
- New Podcast: Marc Smolowitz, Director of ‘The Power of Two’
- Fishing and Golf Event in Mexico to Benefit CF, MS
- Nick News Special Focuses on Organ Donation, Features Teen with CF
- Tickets on Sale for Annual Refi Rock Halloween Party
- Troupe with CF Dancer Finishes in Second Place on America’s Got Talent
- CF Chef Recipe Contest Deadline is September 28
- Boomer and Carton Host Special Guests at BGC Charity Day Broadcast
- New Podcast Features Jerry Cahill on Getting Involved in the CF Community
- Boomer Esiason Remembers 9/11 in NFL Video Interview
- Dancer With CF Part of Troupe in Finals of 'America's Got Talent'
- Sales of Vineyard Vines Tie and Tote Bag Benefit BEF
- BEF Board Member Timothy O’Brien Remembered as 9/11 Anniversary Nears
August- 2011 Exercise for Life Scholarship Recipients Named by Boomer Esiason Foundation
- 'Power Of Two' Movie Hits Oscar Qualifying Circuit; Documentary Features Sisters With CF
- Team Boomer Issues Last Call for Guaranteed Spots in the 2011 ING NYC Marathon
- Save the Date: 2012 Boomer's CF Run to Breathe
- Pulmatrix Invests in Clinical Programs in Cystic Fibrosis and COPD
- BEF Releases Video Recapping Boomer's CF Run to Breathe
- 2011 CF Scholarship Recipients Named by Boomer Esiason Foundation
- Insmed Announces Clinical Hold on ARIKACE® Phase 3 Clinical Trials
- New York Yankees Present BEF with Proceeds from Softball Event
- New CF Wind Sprint Demonstrates Simple Exercises for the Legs
- CF Foundation Kicks Off 'Make Every Breath Count' Campaign
- National Minority Donor Awareness Day Marks Fifteenth Anniversary on August 1
- Teen with CF Educates Multicultural Populations About Organ Donation and Coping with Serious Illness
July- Vertex Plans to Submit New Drug Application for VX-770 to FDA in October
- Most Parents Unaware of Medical Research Opportunities for Their Kids
- Changes in Lung Stem Cells May Contribute to CF Progression
- Electromed Awards Jerry Cahill First Annual Distinguished Service Award
- New Podcast Discusses Organizing CF Medical Information and Being Your Own Patient Advocate
- Battle of the Bugs: Pseudomonas Breaches Cell Wall of Rival Bacteria Without Hurting Itself
- Bacteria Use Batman-Like Grappling Hooks to 'Slingshot' on Surfaces, Researchers Find
- CF Chef Recipe Contest and Online Nutrition Program Launched by Abbott
- New Invasive Diagnostic Procedure Seems to Be No Advantage Over Current Standard Procedure
- FDA Approves 25,000 Lipase-Unit Strength of ZENPEP®
- Results and Photos from the CF Run to Breathe
- Thousands Participate in CF Run to Breathe
- BEF President Dave Rimington Featured on ESPN.com
- New Podcast Discusses Being a CF Parent
- The Summer's Hottest Party: Boomer and Carton on Fire Island
- Civilian Military Combine to Benefit BEF
June- New CF Wind Sprint Demonstrates Simple Upper Body Exercises
- NY Yankees Fundraiser: Check Out the Photos!
- Researchers Discover New Airway Stem Cell
- Esiason Hosts Charity Softball Games at Yankees Stadium
- New Report Helps Adolescents Transition to Adult Care
- Empire Challenge Photos Available Online
- Refi Rock Spring Fling ROCKS Statue of Liberty
- Support Gunnar Esiason and Jerry Cahill in the Run to Breathe
- LI Bests NYC in 16th Empire Challenge All-Star Game
- Irish Woman Receives Groundbreaking Lung Transplant
- Signaling Pathway Is 'Executive Software' of Airway Stem Cells, Researchers Find
- Changing Genetic ‘Red Light’ to Green Holds Promise for Treating Disease
- FDA Approves Infant Dosage for CREON
- Rare Diseases Often Caused by Mutations in Essential Genes, Researchers Find
- Vertex to Expand Access to VX-770 for Patients with Critical Medical Need
- VX-770 Shows Positive and Lasting Results Throughout 48-Week Phase 3 Study
- Phase 2 Study of VX-770 and VX-809 Show Promising Results in Patients with Most Common Mutation
- Aradigm Gets FDA Orphan Drug Designation for Ciprofloxacin for Inhalation in Bronchiectasis
- HHS Reduces Insurance Premiums for Pre-Existing Condition Plan
- Jerry Cahill Inducted into CHSAA Hall of Fame
- NY Yankees Celebrity Softball Event to Benefit BEF
- Exercise: A CF Photo Essay
May- Drug Shortages Force Hospitals to Hunt for Substitutes
- CF Bacteria Could Help Combat Other Superbugs, Researchers Find
- Boomer and Carton to Guest Judge on 'Iron Chef America'
- UnitedHealthcare to Present Annual Empire Challenge
- New CF Wind Sprint Demonstrates How to Use the PowerLung
- WCBS-TV to Air PSA on CF Run to Breathe
- Researchers Identify Genes Linked to Worsening of CF
- U.S. News Releases 2011-12 Rankings of Best Children's Hospitals
- Abbott Test Assists in CF Screening
- New Podcast Discusses Life Before and After a Double-Lung Transplant
- Run for a Cause: Set - and Achieve - an Exercise Goal
- What's Your CF IQ?
- Toronto Student Finds CF Treatment by 'Hacking' Supercomputer
- Jerry Cahill Awarded Ellis Island Medal of Honor
- New Podcast Focuses on Adulthood With CF
- WBUR Special Report on VX-770
- New CF Wind Sprint Demonstrates Cardio Exercises
- Simple Exercise Improves Lung Function in Children with Cystic Fibrosis
- NYRR Opens Registration for Boomer's Cystic Fibrosis Run to Breathe
- CF Awareness Month 2011: The Power of Exercise
April- New CF Wind Sprint on Stretching
- Drug Combo for CF Lung Infections Could Address Antibiotic Resistance, Researchers Say
- FDA Rejects Liprotamase, Calls for More Studies
- Boomer Urges Donor Registrations in New York State Campaign
- New Podcast on Getting Motivated Before and After a Lung Transplant
- CF Patients Fight Grim Prospect with Bright Outlook
- CFF Expands Vertex Partnership
- New Molecular Structures Could Fight Infectious Diseases Better than Conventional Antibiotics
- Clinical Trials Legislation Takes Effect
March- Pittsburgh Hospital Leads in Lung Transplants
- Vertex Press Release on VX-770 Phase 3 Clinical Trial
- VX-770 Trial: 'Profound Improvement' in Kids
- New Wind Sprint on Core Exercises
- Pig Model Of CF Improves Understanding Of Disease
- Researchers Explore 4-D Imaging of CF Lungs
- BEF Scholarship Apps Due 3/15
- FDA Panel Not Sold on Personal Genetic Testing
- New Team Boomer Video: Why Do You Run?
February- VX-770 Achieves Positive Results in Phase 3 Clinical Trial, Vertex Announces
- Axcan Pharma CEO Explains Impact of Axcan-Eurand Merger
January
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December
- Phase 3 Trial of Ataluren Expected to be Completed in 2011
- Denufosol Phase 3 Trial Published in Leading Medical Journal
- TCU Senior Wins 2010 Rimington Trophy
- Samsung, Sears and BEF Team Up to Tackle Cystic Fibrosis
November- New England Journal of Medicine Publishes Phase 2 Study of VX-770 for Treating Cause of CF
- Phase 2 Results Show Ataluren Restores Production of Functional CFTR Protein
- Cystic Fibrosis Gene Typo is a Double Whammy
- Growth Defects in CF May Start Before Birth, Study Finds
- Discovery Labs KL4 Surfactant Granted Orphan Drug Designation for the Treatment of CF
October- Pharmaxis Announces Positive Combined Phase 3 CF Trial Results
- Gilead's Cayston Beats Tobramycin Inhalation Solution in Six-Month Head-to-Head Study
- Analysis Shows TOBI Associated With Reduced Mortality in CF Patients With Common Lung Infection
- Vertex Pharmaceuticals Clinical Trial to Evaluate Combo of VX-770 and VX-809 Targeting CFTR Protein
- Impaired Metabolism in CF Lung Epithelial Cells Revealed by Metabolic Analysis
- Bacteria Identified as New Foe for CF Patients
- Human Growth Hormone Shows Promise in Treating Cystic Fibrosis Symptoms
September- University of Texas Researcher Receives $2.1 Million Grant to Focus on Drug Delivery to Lungs
- 'Improving Access to Clinical Trials Act' Passes U.S. House; Heads to President for Signatur
- PTC Therapeutics Awarded $1.6 Million FDA Grant to Support Ongoing Phase 3 Study of Ataluren
- iTunes Offers New App for Jerry Cahill's CF Podcasts
- Researchers: Vitamin D May Treat, Prevent Allergic Reaction to Mold in CF Patients
August- Luminex Announces Commercial Launch of New CF Genetic Screening Test
- BEF Awards $10,000 Scholarships to Two Student-Athletes
- Out of Grief Sprouts a Life-Saving Legacy
- 'Improving Access to Clinical Trials Act' Passes U.S. Senate in Victory for CF Advocates
July- New CF Drugs Bring Hope; More Survive Into Adulthood, But They Face New Challenges
- Eurand Reports Further Positive Data from Pancreatic Insufficiency Drug Study
- Cincinnati Children's Cited in US News Report As a 'Best' Hospital for CF Kids
- Limit Antibiotics for CF Exacerbations to 10 Days, Registry Study Says
- Lilly to Acquire Alnara; Company's Liprotamase Currently Under FDA Review
June- New Study Examines Impact of MRSA on CF
- Researchers Still Expect Genetic Mapping Project Will Lead to New Drugs
- FDA Extends Availability of Pancreatic Enzyme Therapy Pancrease Until Mid-July
- Pancreatic Enzyme Therapy Pancrease to Have Limited Availability, CFF Says
May- Data Suggest Denufosol May Hold Promise as an Early Intervention Treatment for CF
- Mpex Presents Positive Phase 2 Clinical Trial Results of Aeroquin Treatment in CF
- Aradigm Receives FDA Clearance for Clinical Trial of Inhaled Liposomal Ciprofloxacin
- Azithromycin Doesn't Always Help Lungs in CF Patients Without P. Aeruginosa, Study Finds
Double-Lung Transplant Has ‘Humbled Me Dramatically,’ Cahill Says
by Mary Ann Rinkleff
When Jerry Cahill’s medical team tried to activate him on the lung transplant waiting list more than a year ago, he refused.
Cahill, 55, already had been on the list for more than a decade, added to it back when patients were assigned a number and received a transplant when that number finally came up – if they survived that long. Later, the organ distribution policy was changed so the sickest patients received priority. But by then, Cahill had decided he just wasn’t going to let himself get to that point.
“I stayed on the list when the policy changed, but I was never activated,” Cahill said. “I would get sick, but then I would always bounce back.”
‘I felt like I could fight it more’
Diagnosed with cystic fibrosis in 1967 at the age of 11 and told he wouldn’t live past his teen years, Cahill has beaten the odds for more than four decades.
So his doctors weren’t surprised when they tried again to activate him early in 2011, and Cahill said no way. “I just felt like I could fight it more,” he said. “I wasn’t at the point where I wanted to surrender, so I exercised more and got better.”
The improvement didn’t last, however, and in March of last year, Cahill was activated on the transplant list at NewYork-Presbyterian Hospital/Columbia University Medical Center. Still, he was not as the top of the waiting list, as his FEVs — the results of a test which indicates how well medium and large airways are functioning — were “decent.”
By June 2011, Cahill’s FEVs had dropped, but due to a variety of factors, he still was number eight on the list. Then, last August, when he was forced to take antibiotics intravenously on a regular basis, his team decided it was time he “double-listed,” or get placed on the list at a second transplant center.
So on January 3, 2012, Cahill was listed at the University of Pennsylvania’s Penn Transplant Institute in Philadelphia.
Over the next four months, Cahill received five calls about possible transplants. All the calls came from New York-Presbyterian; he never received a call from Penn. Three were “dry runs,” where donor lungs became available, the match looked good on paper, but for a variety of reasons, the transplant team decided the lungs aren’t viable. Another was determined to be a poor match early on because the lungs were “high risk.” And one, finally, was the real thing.
A Series of Dry Runs
In February came the first dry run. Cahill went to the hospital with his mother, brother, sister and a friend.
“I was very calm about the whole thing,” Cahill said. “I had been on the list for so long and was always fighting it and always beating the odds … the fact that this was going to happen went on the back burner and eventually just became an everyday thing,” he explained, adding he “never worried about it.”
The donated lungs looked good on paper, but Cahill said “it took a while to find out that it wasn’t going to happen because only one lung was good enough.” So he and his family returned home to wait for the next call.
After the second dry run, in March, Cahill realized the transplant could happen any day and that he “needed to get things organized and in place.” He was sick – on IV antibiotics and oxygen – but he asked that his activated status be put on hold for a week while he took care of paperwork and other plans he wanted to deal with before the transplant.
Cahill, who for many years has coached pole vaulters at Iona Preparatory School in New Rochelle, N.Y., said he was most concerned about missing the state track meet. “I was worried about not being there for them, so I got a former coach set up to take over if I got the call,” he said. In the end, he was able to watch one of his athletes win the state meet and take eighth in nationals.
“The dry runs became a pain, but I was really happy to be able to stay involved with the pole vaulters through the end of the season,” Cahill said.



