Linda Hood, Mother of Twin Boys with CF, Talks about Transitioning…


Linda Hood from Cincinnati, Ohio talks about growing up with twin boys with CF – Keith and Kyle – and transitioning to an adult CF center. Linda’s boys were born 4 weeks early and found out they had cystic fibrosis at 6 months of age.

• “Finding out my twin boys had cystic fibrosis was the most devastating thing in my life…? states Linda
• Linda states; “the doctors told a horrifying story and said my boys would not live to 18 years of age?
• Linda and her family were proactive and started fundraising for a cure.
• Being a caregiver is scary due to concerns/fear of germs at school.
• Linda discusses making the transition from pediatric to adult CF center and the resources available to adults.
• Linda gets her support from her husband - “My husband is my strength and gets me through the tough times…?
• “Stay hopeful… do what the doctors tell you to do… do not take shortcuts,? states Linda.
• Linda’s advice: “Let your son or daughter be boys or girls and ENJOY LIFE!?
• Keith and Kyle are in college today and LIVING BREATHING SUCCEEDING.

Courtney Ward Runs NYC Marathon for Team Boomer in 4 Hours 56 Minutes

Justin Carlson, Transitioning from High School to College – The Next Step to Success.

With the help of today’s therapies, cystic fibrosis (CF) patients are now living longer and achieving more than ever before. Pulmonary treatments are enabling adults with CF to pursue their dreams by entering college and the career world.

“Justin Carlson, Transitioning from High School to College – The Next Step to Success,? features Justin Carlson, an 18-year-old young man with CF. Justin talks about becoming independent and dealing with doctor’s appointments, CF therapies, going away to college vs. commuting, and the importance of compliancy on a daily basis. Justin believes in the importance of the “doctor/patient relationship? and “taking control of your CF.?

Key messages in the Podcast include:

• Taking control of your CF and not letting it catch up on you, even when you don’t feel sick, is crucial for a good quality of life.
• Developing a strong relationship and communicating with your doctor and health care team, at an early age enhances your independence.
• Time-management and “practiced independence and confidence? help prepare individuals with CF for college and the real world.
• The keys to staying healthy are compliance to medications, therapies, exercise, and good nutrition.
• Parents should give their child with CF “reminders? regarding therapy, and instill independence in them at an early age.
• Parents should encourage their child to spend separate one-on-one “quality? time with their doctor.
  
  * This Podcast is made possible through and unrestricted educational grant from Genentech to The Boomer Esiason Foundation.

Scott Johnson is 35 years old with cystic fibrosis and LIVING, BREATHING, SUCCEEDING as he celebrated 6 years post double lung transplant on September 15th.  “Dreams do come true,? states Scott, as he gets ready for the Hawaiian Ironman Championships on October 13th 2007 in Kona, Hawaii. This is the most prestigious race in triathlon and the pinnacle of most people’s career. The Hawaii Ironman is the equivalent of the Tour de France, the Super Bowl, the World Series, and Wimbledon. Scott, competing for Team Boomer, has accepted this challenge to try and inspire people with CF to make exercise a part of their normal routine.

• Scott grew up in Jacksonville, North Carolina and was diagnosed with CF at 2 months.
• Scott received a double lung transplant on September 15th 2001.
• “Exercise and a Positive Attitude? helped Scott make it through the surgery.
• Scott states: “My quality of life with my new lungs is better than living with CF?.
• On Mother’s Day in May 2003, Scott crossed the finish line of his first triathlon… a gift for himself and his mother Marilyn.
• Scott has competed in over 25 triathlons of various distances and is now ready for the most elite triathlon, the Hawaii Ironman (swim 2.4 miles, bike 112 miles, and run 26.2 miles)
• Scott’s family and fiancé, Leanne, will be cheering him on in Hawaii and Scott will be getting married 3 days after the Ironman competition.
• Prior to each race Scott writes his transplant date on his forearm to remind himself of where he came from and his “new beginning?.
• By competing for Team Boomer, Scott is helping to raise money for the Exercise for Life scholarship for people with CF. Join Scott and the cause: www.firstgiving.com/cfironman
• Check out Scott’s photo’s and video at: www.myspace.com/slowesttriathlete
• “Do Not Be Afraid of Death… Be Afraid of the Half Lived Life?
• Scott’s words of encouragement for others with CF or facing a transplant: “Maintain a positive outlook, don’t give up, and keep exercising – miracles do happen…? 
  
   

Title: Abby Tranel Wins 2007 Exercise for Life Scholarship


Abby Tranel from Hampton, Nebraska wins $10,000 scholar-athlete award for people with CF. Abby ran the 1.5 mile run in 10 minutes 19 seconds at Nebraska Wesleyan University’s track in Lincoln, Nebraska. Abby is a graduate of Hampton High School in Hampton, NE and graduated with a 3.5 G.P.A. and will be attending Nebraska Wesleyan University in the fall.

• Abby has always been involved in sports including volleyball, basketball, and track. School activities include the Student Council, Cheerleading, Speech, Drama, and President of the National Honor Society.
• Abby was diagnosed with CF at birth and also has an older sister with cystic fibrosis that competed nationally in track & field for University of Nebraska.
• “Exercise and therapies for CF have very much become an integral part of my life and daily routine.? states Abby.
• “After a few months of steady running, my lung function tests improved dramatically. It was not just the test results that kept me going with running… I just simply felt better, and most importantly felt that I was now in control of my CF, it was no longer controlling me!? Abby states confidently.
• Abby lives a normal life and does not make a big deal about CF.
• “My mom has taught me and my sister to be very independent at an early age and I thank her for that…?
• Regarding college… “I look forward to meeting new people and am beginning to realize all the opportunities that college and our world has to offer.?
• Besides being compliant to her medication and therapy, Abby has learned the value of exercise, keeping a routine, and following through for positive results.
• “I have realized that if you want to be big you have to dream big… and that is just what I am doing despite having CF!? states Abby.
   

Title: Patrick Robinson wins 2007 Exercise for Life Scholarship


Patrick Robinson from Sandown, NH wins $10,000 scholar-athlete award for people with CF. Mr. Robinson ran the 1.5 mile run in 10 minutes 10 seconds at his former high school Timberlane Regional H.S. in Plaistow, NH as his mom, dad, and younger brothers Andrew and Christopher cheered him on. Patrick recently graduated with a 3.9 G.P.A. and will be attending Boston University in the fall.

• Patrick is very involved in sports including skiing, hiking (Patrick is an Eagle Scout), track, and Ultimate Frisbee and attributes exercise to playing a major part in keeping his lungs clear.
• “Playing the trumpet in marching band also was a great form of airway clearance? states Patrick.
• Patrick was diagnosed with CF at 3 months of age.
• Great Strides Walk-a-Thon team “Patrick’s Patrollers? walks every year to raise money for CFF and a cure.
• Regarding college… “I look forward to meeting new people and being more independent?.
• Besides being compliant to his medication and therapy, Patrick goes above and beyond this daily ritual by running 2 miles everyday.
• “I believe in embracing the disease and not running from it? states Patrick.

Title: Kristin McFall, Time Management and Staying Compliant in Adulthood

With the help of today’s therapies, cystic fibrosis (CF) patients are now living longer and achieving more than ever before. Pulmonary treatments are enabling adults with CF to pursue their dreams by entering college and the career world.

“Kristin McFall, Time Management and Staying Compliant in Adulthood,? features Kristin McFall, a 36-year-old career woman with CF. Kristin talks about succeeding in life, her career, traveling, and winning the battle with CF on a daily basis through therapy compliance. Kristin believes in the importance of “understanding your disease and partnering up with your health care team.? The podcast is now available for downloading on www.jerrycahill.com beginning on May 4th, 2007.

Kristin discusses the importance of being compliant and proactive as an adult with CF while maintaining a career and busy social life.

Highlights from the Podcast include:

• Taking care of your health and being compliant with medical therapies are an integral part to being successful in your career as an adult with CF.
• The key ingredients to staying healthy and having a better quality of life are: compliance to medications & therapies, exercise, nutrition, hydration, and sleep.
• CF is a life-long illness therefore you must learn to be an expert with yourself and revel in the day!
• t is important to maintain a partnership with your CF Center and stand up for yourself.
• CF adults must learn to “multi-task? and “stay clear? by being disciplined with your health care.
• Kristin’s “Fabulous 4? tips for being compliant include: bronchodilators, Pulmozyme, airway clearance, and inhaled antibiotics.

“Making Fun Contagious?…

Jo Anne McKinney and Grant Prather make BIG FUN for many pediatric patients with the BIG FUN BOX. The mission statement: To share with pediatric patients and their families’ ways to use their imagination to give them comfort and fun in the midst of stressful situations. The BIG FUN BOX is filled with a stress toy, folding ruler, colored pencils, pencil sharpener, jigsaw puzzle, HeadGames, Find’ems, imagination pad, thank you notes, plastic stencil, and playing cards.

• “The BIG FUN BOX is filled with imagination and you can let it take you wherever you want to go…? states Jo Anne
• Jo Anne has spent many hours in the hospital with her son Grant, due to his cystic fibrosis, and they learned to “make their own fun?
• The BIG FUN BOX is an activity box for children in the hospital with chronic illnesses (ages 7 to 12)
• The BIG FUN BOX was launched in October 2006 and has delivered over 3,100 boxes in 9 states to 31 hospitals. “Our goal is to raise $2.0 million and deliver 100,000 BIG FUN BOXES? states Jo Anne.
• “The BFB is a great vehicle to rescue patients after being in the hospital for 5-6 days and you just find out you will be in longer?
• The BIG FUN BOX seeks corporate sponsors to bring BIG FUN to children with chronic diseases. Jo Anne needs to raise $27,000 before 1,000 boxes can go into production.
• The BIG FUN BOX is a 501 c (3) non-profit organization.
  
  For more info: www.thebigfunbox.org or call: 904-730-0956

Title: Adult Cystic Fibrosis Day


Baylor University Medical Center in Houston, Texas held a ground breaking event with the first ever Adult CF Day. This educational event featured Boomer Esiason and Dr. Marcia Katz speaking about how we are "living a medical miracle" with 40% of the CF population being adults and living longer with a better quality of life.

• Adults with CF are attending college, have careers, and having families.
• Adults with CF maintain a "positive mental attitude" and keep raising the bar.
• With the explosion of the adult CF population "transitioning" to an adult program is crucial.
• Adults with CF are living longer and maintaining a better quality of life.
• Adults are mentors for younger individuals with CF and their families.

   

Title: Adult Cystic Fibrosis Day


Baylor University Medical Center in Houston, Texas held a ground breaking event with the first ever Adult CF Day. This educational event featured Boomer Esiason and Dr. Marcia Katz speaking about how we are “living a medical miracle? with 40% of the CF population being adults and living longer with a better quality of life.

• Adults with CF are attending college, have careers, and having families.
• Adults with CF maintain a “positive mental attitude? and keep raising the bar.
• With the explosion of the adult CF population “transitioning? to an adult program is crucial.
• Adults with CF are living longer and maintaining a better quality of life.
• Adults are mentors for younger individuals with CF and their families.