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.

Title: Kyle Connolly Talks about being Compliant, Exercise, and College Life.


Kyle Connolly is a 21 year old college student that “stays clear? by doing aerosols and vest treatments 3 times per day and exercising on a daily basis to keep his lungs clear. Kyle works very hard to stay healthy so he can have a better quality of life and enjoy!

• Kyle was diagnosed at 7 weeks due to “failure to thrive?
• Growing up with CF was non-eventful until high school when he started having more infections.
• Kyle attends Xavier University in Cincinnati, Ohio and will be a senior next year.
• “Being involved in sports all my life has helped keep my lungs clear!?
• Kyle participated in football, baseball, soccer, wrestling, and cross country growing up and now is a varsity cheerleader at Xavier University.
• Kyle also enjoys running and competes in the FLYING PIG MARATHON every May in Cincinnati, Ohio. Kyle is part of a team and runs the ½ marathon (13.1 miles)
• “Time management is the biggest challenge I face daily living with CF but I just do it – I have no choice if I want to enjoy everything life has to offer? states Kyle.
• Kyle is very excited about all the new drugs in the pipeline for people with CF.

 

Bob Hansen, Chairman, CEO, and co-founder of Electromed, Inc in 1992, makers of Smart Vest, discusses the newest and most advanced airway clearance system SMARTVEST. The vest is designed for comfort and ease-of-use to support patient compliance as well as being efficient, portable, and cost effective.

- Smart Vest – airway clearance system or High Frequency Chest Wall Oscillation (HFCWO) is the mechanical loosening, mobilization and release of excess mucous.
- The Smart Vest is effective, convenient, and comfortable. Patented vest design (soft fabric & washable) delivers HFCWO with a calmer, gentler, and more relaxed treatment experience.
- Generator is programmable to assure consistent treatments each day.
- Vest size fits small toddlers to large adults.
- Wheeled Smart Vest Trimeline Carrier travels easily and fits inside airplane as a carry-on.
- Smart Vest offers lifetime warranty and upgrade policy.
- “Innovation is an important part of our company? states Bob Hansen
- All field staff are Respiratory Therapists.
- Smart Vest is an international company and offers a 24 hour toll free number.
- “The compact size of Smart Vest makes it a great for people with CF going away to college? states Bob Hansen
- Smart Vest is based in New Prague, MN. For more info call: 800-462-1045.
- Website: www.electromed-usa.com

EXERCISE for LIFE SCHOLARHIP The Boomer Esiason Foundation has created a scholar-athlte award to assist cystic fibrosis senior high school athletes pursuing undergraduate degrees.

- "Exercise is the single most important thing in my life that keeps me healthy... jogging is a universal activity that everyone can partake in without the need for an expensive gm or pool membership" states Jerry Cahill who is a 50 year-old with CF. Jerry has been exercising all his life in spite of having CF.
- The goal of the scholar athlete award is to raise awareness, improve the quality of life and lifespan of individuals with CF through the power of daily physical exercise.
- The scholarship will be awarded annually based on demonstrated financial need, academic accomplishment and athletic ability in the area of running. All finalist will be timed in a 1.5 mile jog.
- Award: 1 female winner and 1 male winner each receiving $10,000. awarded to the college of their choice.
- The student/athlete should be jogging on a regular basis and training for the 1.5 mile run. All candidates will be judged on time.
- Scholarship launches May 1st 2007
- Deadline July 29th 2007
- For more information and applications go to: www.cfscholarships.com

Laps for CF Foundation
...on the road to a cure...

The Laps for CF Foundation is an organization based out of Birmingham, Alabama that fights Cystic Fibrosis everyday.  Together with CF supporters across the United States, the laps for CF Foundation raises money and awareness for Cystic Fibrosis.

• The money the Foundation raises is awarded to 3 main organizations: The Cystic Fibrosis Foundation, CF Hope for Alabama, and CF Care Clinics.
• Emily Schreiber was diagnosed with cystic fibrosis in the winter of 2003. After diagnosis and reading a  book called Karen's Ride - where a young girl, Karen, raised money for her local hospital... Emily decided  to do the same for Cystic Fibrosis.
• The first year Emily swam at Wald Park in Vestavia, Alabama and raised over $60,000.
• In 2005 Emily swam with the Auburn University swim team and raised over$220,000.
• Emily plans on teaming up with the Boomer Esiason Foundation to combat cystic fibrosis by launching Swim-a-Thons with 15+ Universities across the nation.
• For more information: www.lapsforcf.org
• E-Mail Emily at: emily@lapsforcf.org

Title: Brian’s Ride

Brian McCandless is like any  average nineteen year old university student except, like 30,000 Americans, he has cystic fibrosis. On May 16th 2007 Brian will cycle from Pittsburgh, PA to Tallahassee, Florida and back… to raise awareness for cystic Fibrosis. Brian will bike over 2,000 miles (25 day trip) averaging 100 miles per day.

- Brian was diagnosed at 2 months of age due to “failure to thrive? and is from West Sunbury, PA.

- Brian is a freshman at Slippery Rock University and a member of the cycling club

- “I believe biking is the best form of airway clearance? states Brian.

- According to Brian “People with CF are often told not to over exert themselves. I say EXERT ON! No one should ever be told they cannot do something?

- Brian believes the most important factor in maintaining his health is “exercise and nutrition?

- “My goal for Brian’s Ride is to increase CF awareness, raise money for CF research, and most importantly, give hope to children who are diagnosed with CF.

- To donate to Brian's Ride or for more information go to: www.briansride.org

 

GOOD LUCK BRIAN!

Blubrry Jam Featuring Brother Love to raise funds for Boomer Esiason Foundation.  Come Join the Fun!

Date
Saturday, Apr 7, 2007

Time
7:00 pm - 11:00 pm

Location
Canal Room
285 W. Broadway
New York, NY 10013 Date: April 7th
Location: Canal Room
New York, NY

Price: $18 Online
http://blubrryjam.eventbrite.com/

$20 at the Door

I hope to see you at the Canal Room

Title: CF Great Strides NYC Walk – Raising Money for a Cure!

Dawn and Stan Zolek are parents of 3 year old Stanley, who has CF and a 1 year old daughter who is a carrier of the gene. They are chairing the NYC Great Strides Walk in their neighborhood, Battery Park City.

The event is “feel good type of day!? and raises money for research to help find a cure for cystic fibrosis.

• “Stanley is compliant to his daily routine and does his “work out? (vest treatment) twice a day? states his dad Stan.

• Stanley’s website: ilovestanleynyc.com

• “CF Great Strides is a fun day with lots of family and community involvement? states Dawn Zolek.

• CF Great Strides is a 6.2 mile walk and is the Cystic Fibrosis Foundation’s largest national fundraising event. The event has 100 sites nationally and raised over $32 million last year.

• The metro New York area will be hosting 4 sites for the event:

  • Battery Park City, NYC on Saturday, May 19^th 9am

  • Rye Playland, Rye, NY on Sunday, May 20^th 9am

  • Clove Lakes Park, Staten Island, NY on Saturday, June 2^nd 9am

  • Bowdoin Park, Poughkeepsie, NY on Sunday, June 3^rd 9am

• More information on CF Great Strides nationally is available at: www.cff.org/great_strides

My Podcast Alley feed! {pca-c360b5469328cb89aa7d70dfb79fc069}

TITLE: “The Connolly Twins – Transitioning into Adulthood with CF?

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 individuals with CF to pursue their dreams by entering college and the career world

Keith and Kyle Connolly, 21-year-old twin brothers and college students with CF talk about transitioning into college and adulthood. Keith and Kyle talk about growing up with CF and the lessons they have learned as they become more independent and responsible for their own health care. Keith and Kyle’s mother, Linda Hood, also shares her perspective on raising twin boys with CF and learning to “let go.?

Keith and Kyle discuss the importance of taking responsibility for their CF health care while maintaining their busy college schedules.

Highlights from the Podcast include:

• Preparation and compliance are integral in making a successful transition into adulthood with CF.
• The keys to staying healthy are compliance to medications, therapies, and exercise.
• Time-management in college is crucial for maintaining health and quality of life.
• Prior to moving away to college, begin to transition into self-ownership of health care.
• It is important to maintain a relationship with your CF Center.
• For parents - instill realistic hope within your child, and raise him or her to be independent; through age-appropriate responsibilities related to their health care.
• When children leave the home, parents should have confidence in how their children have been taught to care for themselves.
  

Title: Action speaks louder than words… “EXERCISE FOR LIFE?

EXERCISE FOR LIFE was created by the Boomer Esiason Foundation to educate, raise awareness to the importance of exercise & compliance with CF, and to raise money for college scholarships for people with CF.

The EXERCISE FOR LIFE program serves as an inspirational message to CF patients, family members & the general public about the benefits of exercise and compliance to medical advice in the “here and now?

- “Exercise is the single most important thing in my life that keeps me healthy? states Jerry Cahill at 50 years old with cystic fibrosis.
- Jerry has been exercising all his life in spite of having CF - baseball, football, hockey, track & field (pole vault) and most importantly “jogging/running? on a daily basis.
- Doctors and CF centers “talk about it? but we need to get everyone with CF “doing it? Your lungs are muscles and need to be worked to keep them clear and strong.
- Besides being “compliant? to medication and therapy routines – exercise should be part of EVERYONE’S daily ritual.
- Jogging/walking is a UNIVERSAL activity that everyone can partake in without the need for an expensive gym membership or a pool. Jogging “outside? is key to oxygenating the lungs and keeping your airways clear.
- “The goal of exercise is to improve the quality of life and lifespan of individuals with CF through the power of daily physical activity

Title: Action speaks louder than words… “EXERCISE FOR LIFE?

EXERCISE FOR LIFE was created by the Boomer Esiason Foundation to educate, raise awareness to the importance of exercise & compliance with CF, and to raise money for college scholarships for people with CF.

The EXERCISE FOR LIFE program serves as an inspirational message to CF patients, family members & the general public about the benefits of exercise and compliance to medical advice in the “here and now?

- “Exercise is the single most important thing in my life that keeps me healthy? states Jerry Cahill at 50 years old with cystic fibrosis.
- Jerry has been exercising all his life in spite of having CF - baseball, football, hockey, track & field (pole vault) and most importantly “jogging/running? on a daily basis.
- Doctors and CF centers “talk about it? but we need to get everyone with CF “doing it? Your lungs are muscles and need to be worked to keep them clear and strong.
- Besides being “compliant? to medication and therapy routines – exercise should be part of EVERYONE’S daily ritual.
- Jogging/walking is a UNIVERSAL activity that everyone can partake in without the need for an expensive gym membership or a pool. Jogging “outside? is key to oxygenating the lungs and keeping your airways clear.
- “The goal of exercise is to improve the quality of life and lifespan of individuals with CF through the power of daily physical activity

Beth Sufian Podcast Show notes

Title: New Challenges in Obtaining & Maintaining Health Insurance

Beth Sufian is an attorney and a 41 year-old with cystic fibrosis. She is the Director of the CF Legal Information Hotline, sponsored by CF Services Pharmacy, which has assisted over 7,000 people with CF. Beth serves on the CF Foundation Advisory Task Force on Adult Issues.

• Beth talks about knowing your legal rights and advocating for yourself and children.

• Beth discusses who qualifies for Social Security benefits, Medicare and Medicaid.

• Learn pointers on how to obtain health insurance for children and adults with CF and how to deal with increasing drug co-pays.

• CF Legal Information Hotline offers free and confidential information on legal rights of people with CF. Call: 1-800-622-0385 or Email: CFLegal@cfserv.com

• Learn about the “golden nuggets? of HIPAA

• “Keep good records? suggests Beth

• COBRA Insurance - Consolidated Omnibus Budget Reconciliation Act.

• Beth gives pointers on Transitioning to Adulthood.

• Beth also talks about Government Programs:

  • SSI – Supplemental Security Income

  • SSDI – Social Security Disability Income

  • Medicaid

  • Medicare

• Beth Sufian’s clients include many people with CF. She is based out of Houston, Texas and travels nationally.

Title: With Every Breath – stories about people living with cystic fibrosis.

Katherine Russell is 16 years old with cystic fibrosis, from Buffalo, NY. Katherine’s book has a wide variety of writers from young, old, parents, patients, doctors, and friends. It demonstrates how the individual with CF as well as family and friends deal with CF.

This book is very inspirational and educational for all involved in the world of cystic fibrosis.

• Katherine is an outgoing young lady that swims on 2 teams, snowboarding, and loves socializing with her friends, music (cello) and writing.

• Katherine attends high school and is a volunteer on the CF advisory panel at Children’s Hospital of Buffalo to help work towards better CF care.

• “I want to travel to South Africa and Europe someday? states Katherine.

• In Katherine’s book With Every Breath, the stories range from recounts of having a child diagnosed with CF to being a patient receiving a transplant.

• Some stories simply share advice and perspective, while others share stories of travel, success, understanding, and change.

• For more information on the book contact Katherine Russell:
  www.lifewitheverybreath.com