54 Years Old and Living-Breathing Succeeding With Cystic Fibrosis

In this episode, we talk with Lynne Sampson, Executive Director and CEO of the Pennsylvania-based non-profit HelpHOPELive. Lynne and her team at HelpHOPELive are passionate about providing assistance to transplant and catastrophic injury patients, helping to bring down the cost of medical expenses.

•    HelpHOPELive works to mobilize communities in their efforts to raise money for transplant and catastrophic injury patients around the country, thereby helping the patients cover the difference between what insurance can cover and what the family can pay.

•    HelpHOPELive teaches communities how to fundraise and encourages everyone in need of help to engage their communities early.

•    Last year, the organization oversaw 572 online events for patients

•    Through HelpHOPELive, communities raised $8 million in 2011

•    Sampson says many times communities want to help, but don’t know how to do it. 

•    Using HelpHOPELive, patients will be able to keep all funds raised as tax-deductible, meaning the funds will not count towards your income.

•    All funds raised through HelpHOPELive are secured by the organization’s financial team, providing donors a sense that their donations will be accounted for and used for their intended purposes.

•    Patients using HelpHOPELive also qualify for additional grants, including HelpHOPELive matching grants

For more on HelpHOPELive, visit www.helphopelive.org

Direct download: CFPodcast_-_HelpHopeLive.m4v
Category:general -- posted at: 6:13pm EDT

Episode #0116 Joe Sleeper: “Stepping Up and Taking Control of Your Life with CF“

Joe, now 33 years old, was diagnosed with CF at age 5, and also had a sister who was diagnosed with CF. He currently resides in Norfolk, Virginia with his fiancé Jennifer with whom he shares a love of riding motorcycles. Joe works as a Director of IT and enjoys practicing photography on the side. 

Joe Sleeper is LIVING BREATHING SUCCEEDING and determined that he WILL NOT FAIL…

  • Joe has never defined himself by his cystic fibrosis.
  • After heading a rebellious downward spiral in his teen years, he regrouped and took control of his CF after his sister passed away from the disease. “I had to regroup and take control of my life when my sister was gone. I was always sick with infections, my weight dropped to 118 pounds, and my PFTs were in the 20s… not a good thing,” stated Joe. 
  • “I wanted to change… I did NOT want to be sick… the light bulb went on in my head and I took control. I went to Barnes & Noble and started looking at fitness magazines and started reading Muscle Magazine. I also started going to the gym and started lifting weights,” states Joe.
  • Joe noticed he started gaining weight in a few weeks and after several months his PFT’s went up. “Over time I gained over 50 pounds and my PFT’s went from 20% to 58%.”
  • Joe’s biggest challenge with CF is time management but he is confident that he will continue to “Breathe Easy” with his fiancée, Jennifer. – “My greatest support system along with my parents”.
  • “Being disciplined with my CF treatments and my exercise is an investment I make so I can enjoy life” states Joe.
  • Joe’s recommendations to young people with CF rebelling like he did: “CF today is a different game – It’s NOT a loosing game. You can and will live well past 30 years old. YOU are NORMAL and YOU are worth it!”
  • What Joe wants people to know about him: “I am not a CF patient, I am just Joe, a guy that love riding motorcycles.” 

This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

Direct download: 01_JoeSleeperFinal.mp3
Category:podcasts -- posted at: 4:14pm EDT

For 56 years, Jerry Cahill has courageously battled cystic fibrosis while awaiting a life-saving double-lung transplant.

In April 2012, Jerry got the call. A new pair of lungs had become available.

As a testament to his courage and dogged perseverance, Jerry crossed the finish line at the 2012 Boomer's Run to Breathe 10K - barely three months removed from his transplant surgery.

Now, for the first time since that surgery, Jerry opens up about life before and after receiving a new set of lungs.

Direct download: JerryInterview.m4v
Category:general -- posted at: 3:45pm EDT

July 21, 2012

Central Park
New York, NY

In its second year of existence, the Boomer's Run to Breathe 10K saw over 5,000 runners come out in support of the Boomer Esiason's fight against cystic fibrosis.

Among them, Jerry Cahill - a 56 year-old living, breathing and succeeding role model to the cystic fibrosis community. Barely three months after receiving a double-lung transplant, Jerry took to the pavement in Central Park and completed a challenging 10K.

Today, Jerry continues to inspire the CF community through his involvement in high school coaching,Team Boomer (www.esiason.org/teamboomer) and his newest initiative, You Cannot Fail (www.youcannotfail.com).

Follow Jerry through the CF Podcasts (www.jerrycahill.com), CF WindSprints (www.cfwindsprints.com), and via Twitter (@bigair).

Direct download: RuntoBreathe2012.m4v
Category:general -- posted at: 12:33am EDT

Episode #0113 Caregiver: A Day in the Life of a CF Mom Catherine Hopkins

“A Day in the Life of a CF Mom/Caregiver: Catherine Hopkins”

Catherine Hopkins is facing the challenge of balancing a full-time job as a vet technician while making it possible for her 3 year old son, Philip to LIVE BREATHE SUCCEED with CF. Catherine and her husband, David, knew the diagnosis was a possibility just 8 weeks into the pregnancy and dove into research immediately. Since then, they have relied on their faith, friends, and family for support throughout their journey.  

  • When Philip was diagnosed at 3 weeks old, they jumped into educating themselves about CF and therapies. Research and education are two of the most important things as a caregiver facing the challenges of CF.
  • “We have been lucky,” Catherine states. In three years Philip has never been hospitalized or had any major scares. 
  • At just 3 years old, Philip is brave in handling his therapies. “He’s my hero,” states Catherine. She is glad he was diagnosed young because it is all he knows. 
  • Catherine is a CF mom, but she is also a normal mom who wants the same things all other moms want for their children. 
  • Catherine and her family don’t think twice about the everyday responsibilities of a CF caregiver. “It’s just a part of our life,” states Catherine. 

This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

Direct download: catherine-hopkins_mixdown.mp3
Category:podcasts -- posted at: 4:33pm EDT

Episode #0112 Bobby Bebber: Overcoming ALL Obstacles with CF

Bobby Bebber: Overcoming ALL Obstacles with CF

Bobby Bebber, 28 years old and living in Miami, Fla., was diagnosed with cystic fibrosis (CF) at age two. Bobby has had three liver transplants and a kidney transplant, and he also has CF-related diabetes, but he continues to fight on and NEVER give up. Bobby, who discusses overcoming all obstacles with CF, is LIVING BREATHING & SUCCEEDING. 

  • Bobby grew up pretty fast. He was in the hospital a lot during his childhood, including for three liver transplants (October 1987, November1987 and May 2001).  Bobby’s mom donated a kidney to him.
  • “My CF has mainly been digestive issues, but now the respiratory component has kicked in, and I am now listed for a double-lung transplant at Duke Medical Center,” Bobby says.
  • Bobby loves sports and played soccer and intramural basketball in high school. He also is passionate about horse racing.  “My uncle owns a few race horses,” he says.
  • “The hardest part about living with CF is not having the lung capacity to do what I like … Being on oxygen limits you,” Bobby says.
  • Bobby’s biggest accomplishment was graduating college, because “I never thought I would do it,” he says.
  • “My goal is to visit all 50 states and live to be 50 years old,” Bobby says.
  • Bobby’s recommendation to others with CF: “Never give up. No matter what people tell you, be a fighter!”

This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

Direct download: Bobby_Bebber_Interview.mp3
Category:podcasts -- posted at: 10:07am EDT

‘Donate Life Month’ Takes on New Meaning with Jerry Cahill Lung Transplant

April is "National Donate Life Month," a celebration which took on new meaning today when the Boomer Esiason Foundation's Jerry Cahill underwent a double-lung transplant.

Jerry, 55 and living with cystic fibrosis, is a volunteer who manages BEF's scholarship and transplant grants programs. He also founded the Team Boomer - Fighting Cystic Fibrosis athletic program, hosts a regular CF podcast and produces the CF Wind Sprintvideo series. In addition, Jerry last fall launched the You Cannot Fail: You Are the Hero of Your Own Story campaign.

Jerry's surgeons earlier today reported that the transplant procedure was a success and that Jerry has been transferred to the intensive care unit at Columbia University Medical Center.

Please join with us in sending thoughts and prayers to Jerry, his family, his medical team and the donor's family during the critical post-op time period. For updates on Jerry's recovery, please visit the BEF Facebook page.

We also invite you to visit Jerry's page in the CF Stories section of our website, where you can view his You Cannot Fail video and read through his complete biography.

Category:general -- posted at: 6:34pm EDT

Episode #0111 CF and Post Double Lung Transplant: One Year with Rick Lerz

Rick Lerz is LIVING, BREATHING and SUCCEEDING after a double-lung transplant.

Forty-five-year-old Rick grew up Queens, N.Y., and was diagnosed with cystic fibrosis at six months. He now is married to his caring wife, Leigh, and the proud father of their 15-year-old daughter, Marty.

Rick, who has spent more than 20 years in the medical field, became a registered nurse in 1990. One of his hobbies includes breeding Sharpie dogs.

•    Growing up, Rick’s life was pretty normal and included exercise and bike riding. But his health started to go downhill when he was 26.

•    “I was listed in March of 2010, and I was blessed to have a very supportive family,” Rick says.

•    “The first thing I noticed post-transplant was that I could BREATHE… I could take a deep breath without coughing… it was truly amazing,” he says.

•    Post-transplant, Rick became the “can do” dad.  “I was able to take my daughter to the mall and walk around with her and shop. That is a great feeling,” Rick says.

•    Rick’s recommendation to people with CF who are thinking about a transplant: “Fight your depression, stay active, and have a strong support team you can talk to.”

•    “I have a new lease on life, and I am a productive, normal guy again. I am very thankful to my donor family,” Rick says.

This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

Direct download: RickLerz.mp3
Category:podcasts -- posted at: 3:55pm EDT

Colleen Caul was born into a big Irish family in St. Louis, Mo. Growing up, Colleen was always active, but her whole life changed in 2004, when her uncle started to coach her little sister, Katie Rose, how to run. Katie Rose has cystic fibrosis. Elated to see the positive effect that running was having on her sister’s health, and inspired by their dedication, Colleen started to run.

In the past five years, Colleen has completed four marathons and recently completed the “Run for Roses,” a 65-day running pilgrimage to spread awareness, raise funds and share stories about cystic fibrosis.

Colleen founded the Run for Roses Foundation (www.runforroses.com) to support her efforts to raise funds toward a cure for CF.

-    In honor of her sister, Katie Rose, Colleen ran from St. Louis to New York City from July to September 2011. She ran 1,000 miles in 65 days for one dream: to cure cystic fibrosis.
-    Colleen ran 15.5 miles each day, and her stretching routine was about three hours a day. She ate Starburst candy for energy during her runs and refueled with chocolate milk.
-    During the 65-day run, Colleen blogged with friends and fans. In Ohio, she had the opportunity to run with a family that has two children with CF. “It was amazing, they both ran four miles with me,” Colleen says.
-    “People with CF never have a day off … when things got tough during a run, I just thought of that and said I can do it!” she says.
-     “Crossing the finish line in New York City was incredible,” Colleen says. “Katie, family and friends joined in for the last five miles – it was an out-of-body experience that I will never forget.”
-    The overall message Colleen wants Run for Roses to communicate is HOPE & POSITIVITY.

This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.

Direct download: Colleen_Rough_11.3_iPhone__iPod.m4v
Category:general -- posted at: 8:52pm EDT

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