Title: Give the Gift of Life…

A Plea to Encourage Organ Donors - Charlie Stockley, Priority Recipient on National Organ Donor List, in Immediate Need of Lung Donor and Transplant

With most people focusing on getting through the holiday season, Charlie Stockley, 38, is fighting to get through another day waiting for a new set of lungs. Charlie is on life support and in immediate need of a lung transplant at Stanford Medical Center in Palo Alto. Charlie is up against his toughest battle with cystic fibrosis (CF). Although he is a priority lung transplant recipient on national organ donor watch lists, his condition remains tenuous as symptoms from CF complicate his recovery and threaten his life. Charlie has been on a life preserving ventilator since Tues, Dec 12, 2006, and a lung match has still not yet become available.

• Charlie has been a tough fighter of this progressive, life-threatening lung disease, and has a lot to live for.

• He met the love of his life 18 months ago, Margie Roper, and they are getting married on March 10, 2007. Charlie can’t wait to make a new home with Margie, and her two children, Michael and Amber who he loves very much.

• Charlie grew up in Livermore, CA and has resided in San Francisco for over 10 years.

• He works as an audio designer at Electronic Arts and has been a professional drummer for numerous bands, including Mojo Deluxe and Mad Dog Toor.

• Please visit www.CharlieStockley.com

• For more information and updates: info@charliestockley.com

December is the month of giving. We encourage everyone to make sure they are registered to show it’s important to them that others are given the opportunity to live a full and productive life. Charlie’s friends and family would greatly appreciate you getting the word out in anyway you can, as soon as you can.

Here are a few things to do:
1.  Take 3 minutes to sign up online to be a donor (by state). In California go to www.donatelifecalifornia.org. Other states, go to: www.donatelife.net
2.  When you sign up online, notify friends and family via email
3.  Tell your family members that you have decided to become a donor so they will understand your decision and support it.
4.  Say yes to donation on your driver’s license
5.  If tragedy should strike someone you know, please think of Charlie, and hundreds of people like him waiting for an organ, and encourage them to give the gift of life.

Passing of Charlie Stockley
From www.charliestockley.com
Charlie Stockley passed away on the night of December 24th, 2006. We fervently believe that Charlie's courageous battle with Cystic Fibrosis has inspired countless people to register as the organ donors that someday might save the lives of others in his situation. Although Charlie didn't receive the lungs he so desperately needed, we know he would be happy if only one person was helped by his struggle. Charlie's family wishes to express their most sincere gratitude for the love, prayers and support that sustained them during their difficult ordeal and demonstrated how many lives were touched by this remarkable man. Please honor Charlie's memory either by registering as an organ donor or making a contribution to any chapter of the Cystic Fibrosis Foundation.

Thanks to all who attended Charlie's Memorial Service & Life Celebration in Livermore on Saturday, January 6th, 2007. What a sincerely beautiful & glorious gathering! Thank you for the memories & memorabilia, all the music, the laughter & tears, your warm hearts & loving arms. A true testament to the power of one. You are invited to view photos from the celebration here.

Title:  Cystic Fibrosis.com Celebrates 10 year Anniversary.


Jeanne Barnett, former computer math teacher and now President of cysticfibrosis.com, talks about her site and how "it is a support community for those dealing with cystic fibrosis" Launched in 1996 with a friend who had CF, the site was started as an experiment but evolved into a major resource for the CF Community that gives people the opportunity to discuss CF with others.

CysticFibrosis.com is a public website and you do not have to sign up.
The site has over 117,372 messages as well as 11,112 threads and 3,396 users
1.   Jeanne reads every message and the site has over 1,000 visitors per day
2.   Cystic Fibrosis.com (www.cysticfibrosis.com) is a "place to share and celebrate life!" states Jeanne Barnett.
3.   The website is global and includes: forums, blogs, faq's, library, kids, CF Center info, photo galleries, recipes, and a section for newly diagnosed.
4.   The forums include topics on adults, families, new diagnosed, nutrition/exercise, transplants, and teenagers/young people.
5.   Jeanne is passionate about her site and states; "The CF Community is ONE family and we are here to support and inspire each other"
www.cysticfibrosis.com

HAPPY 10 YEAR ANNIVERSARY!!!!  KEEP UP THE GREAT WORK!!!!

A big THANKS to Mr. Rob Safuto of the New York Minute Podcast

for his coverage of the New York City Post-Marathon Party at Mr. Denney's Pub.  Rob has been a Quiet Giant of the Boomer Esiason Foundation for quite a while...and was instrumental in teaching me about podcasting in early 2005.

This Podcast can also be heard on the New York Minute Podcast.  The following is Rob's show notes from his podcast.

Check out all of Rob's Podcasts

http://www.podcastnyc.net (New York City Podcast Network)
http://www.newyorkminuteshow.com (Podcast Guide to New York City)
http://www.getyourflow.com (Flow is music...liberated!)
http://community.podcastnyc.net (Join the community!)

This is as close as well get to a New York City Marathon special this year on the show. Not bad though. In association with my friend Jerry Cahill, host of the Cystic Fibrosis Podcast, I covered the Team Boomer post marathon fund raiser.

The event was held at a very nice Irish Pub called Mr. Dennehy's. The pub is located at 63 Carmine St. near 7th Avenue South.

And yes I did interview one actual runner in the marathon. I also talk with Jerry about Team Boomer and mix with some locals who talk about their experiences around town.

This episode also includes a promo for an upcoming show by my pal Brother Love.

Title: RUN SARAH RUN!!!

Sarah Katopodis ran her 1st Marathon in NYC and ran it for Team Boomer – Fighting Cystic Fibrosis, and we are honored!! Sarah raised over $4,000 for the Foundation’s Exercise for Life Scholarship and was presented with a game ball for her unending passion and support for the CF community.

1.   Sarah grew up in New Jersey and attended the University of Scranton and has a masters in marketing.

2.   Sarah is blessed with a beautiful loving family and has a very supportive husband, Taso, as well as 3 phenomenal sons that keep her running marathons on a daily basis – Alex, Evan, and Steven. All were cheering Sarah on during the marathon.

3.   “As a child I used to run with my Grandfather at 6am during the summer at Long Beach Island? states Sarah.

4.   Sarah continued here passion for running with a running group while working in Charlotte, NC and ran 2 half marathons.

5.   Sarah’s NYC Marathon application was declined a few times before finally being accepted for the 2006 NYC Marathon. “From that day forward – the training and commitment began…? states Sarah.

6.   Sarah and her family launched www.cysticfibrois.com over 10 years ago – a informative/educational/supportive site for people with CF and their families and therefore was committed to running the NYC Marathon for a cause related to cystic fibrosis.

7.   Sarah finished the marathon in 6 hours and 20 minutes and is a winner spiritually, physically, and as a committed person in the game of life – CONGRAT’S!!!!

 8.   Check out Sarah’s award winning blog on her marathon experience at: http://blogs.cysticfibrosis.com/index.cfm?forumid=250

Also check out cysticfibrosis.com’s website at: www.cysticfibrosis.com

Donal Dennehy celebrates with Joe Kelly at Mr. Dennehy’s Pub located at 63 Carrmine Street in Greenwich Village NYC. The 1st Annual Post Marathon Party was a huge fundraising success for the Boomer Esiason Foundation’s Exercise for Life scholarship program for people with cystic fibrosis.

1.   Joe Kelly runs his first marathon for Team Boomer – Fighting Cystic Fibrosis in under 4 hours

2.   The Boomer Esiason Foundation presents Joe Kelly with an autographed football by Boomer Esiason for his great cause

3.   Donal Dennehy accommodates the Boomer Esiason Foundation at his restaurant to help raise funds for people with CF

4.   Donal is presented with a game ball for his commitment to the fight against cystic fibrosis

5.   The event was a huge success raising over $5,000. for scholarships and a fun time was had by all.

6.   Donal states “This is the first of many fundraising events that Mr. Dennehy’s will partner up with the Boomer Esiason Foundation to raise money for a cure.

For more information on Mr. Dennehy’s go to: www.mrdennehys.com

MR. DENNEHY’S TO HOST TEAM BOOMER - FIGHTING CYSTIC FIBROSIS POST- NYC MARATHON BENEFIT


- On Sunday, November 5 from 7:00 PM to 9:00 PM, Mr. Dennehy’s located at 63 Carmine Street @ Seventh Avenue in New York City’s West Village will host a post-marathon celebration to benefit Team Boomer- Fighting Cystic Fibrosis.

- The event is open to the public and ticket price is $25, which includes a two-hour open bar. All proceeds from the evening will go directly to the Boomer Esiason Foundation (BEF) to support the Exercise for Life Scholarship for individuals with cystic fibrosis.

- Joe Kelly, an employee at Mr. Dennehy’s, will be representing TEAM BOOMER in the marathon along with many other international runners.

- Team Boomer – Fighting Cystic Fibrosis was developed by BEF and is a USATF-registered competitive club.

- Those who are a part of Team Boomer participate in various races, obtain sponsors, and donate the pledges they receive to BEF. Team Boomer is designed to promote exercise and help raise funds for the Exercise for Life scholarship program for people with CF.

- BEF is a leader in the area of academic scholarships and transplant grants and is now being proactive as the frontrunner in the area of exercise for individuals with CF.

- Mr. Dennehy’s, located at 63 Carmine Street at Seventh Avenue, is a traditional Irish pub and restaurant known for its live music, great food and charming bartenders.

- Mr. Dennehy’s has received rave reviews from Time Out New York, New York Magazine and CitiSearch and is a New York pub that’s not to miss.

For more info:

o Call: 212-414-1223

o www.mrdennehys.com

o donal@mrdennehys.com

Isabel Stenzel Byrnes Interview
 
The Power of Two - a family story of twins Isabel and Anabel surviving with CF

Jerry Cahill interviews part time social worker, Isabel Stanzel Byrnes, who is 34 years old with CF post transplant 2.5 years (Isabel received the gift of life on February 6th 2004). Isabel has an identical twin sister, Anabel Stenzel, who also has CF and is post transplant 6 years.

1. Isabel grew up in Los Angeles, California
2. Diagnosed 3 days post birth
3. At age 5 started having a lot of respiratory infections
4. Isabel started having chronic pseudomonas at age 10
5. Attended Stanford University undergraduate school
6. Attended University of California, Berkeley graduate school
7. Isabel and Ana lived in Japan and taught English for a few years
8. Isabel has always been active in the area of exercise pre and post transplant and is an avid hiker.
9. Isabel has been married for 8 years to a wonderful man and support person, Andrew Byrnes.
10. "The transplant was a spiritual event" states Isabel.
11. "I survived with CF and the transplant due to all my exercise, I had a lot of muscle strength"states Isabel.
12. Isabel has competed in the United States Transplant Games that includes over 1800 athletes. Isabel won 1 gold and 2 silver medals!!
13. Isabel and Anabel have written a book: The Power of Two. A family story about twins surviving with cystic fibrosis.
14. For information on the book please contact Isabel at: isabear27@hotmail.com

 

Title: CF Education Day comes to NYC


When: October 15th 2006 from 11am to 4pm
    
Where: The Yale Club in New York City

Info: cfday2006@aol.com

Phone:  800-622-0385

Come hear nationally recognized speakers at this one time event.
The event is free and includes lunch
Everyone must register to attend
Speakers will discuss:
o     ways to obtain health insurance and make it cover treatments needed to fight CF
o    Laws that protect children with CF in school
o    Strategies for living a successful life with CF
o    New drugs on the CF Horizon
o    Treatments and care of children and adults with CF

Due to cross infection no one with CF can attend this event.
To find out other ways adults with CF can participate in this event please contact: cfday2006@aol.com or call: 800-622-0385

TEAM BOOMER – FIGHTING CYSTIC FIBROSIS
USA Track & Field Club #06-1114


Millions of people worldwide are marathon runners…
Millions of people worldwide jog, bike, swim, and exercise…
Some people jog to stay in shape…
People with cystic fibrosis jog to BREATHE!

Because I have cystic fibrosis I want to prove that I can breathe.
-Jerry Cahill/Age 50 Cystic Fibrosis Podcast

Team Boomer – Fighting Cystic Fibrosis was developed by the Boomer Esiason Foundation (BEF) and is a USATF-registered competitive club. BEF is a leader in the area of academic scholarships and transplant grants and is now being proactive as the frontrunner in the area of exercise for individuals with cystic fibrosis (CF). Team Boomer is designed to promote exercise and help raise funds for the Exercise for Life scholarship program for people with CF, which helps them pursue their academic dreams.

As an athlete, Boomer Esiason knows how important exercise is for improving health, especially for those with cystic fibrosis. Participating in sports and physical activity helps increase the quality of life and health, and teaches discipline. Like athletes’ dedication and daily regiments on the playing field, CF patients must be compliant to daily therapy and medication routines. Your lungs are muscles and need to be worked to keep them clear and strong – exercise should be part of EVERYONE’S daily routine. Team Boomer’s goal is to improve the quality of life and increase the lifespan of individuals with CF through the power of daily physical exercise.

By sponsoring an athlete, you are helping the Boomer Esiason Foundation and Team Boomer raise money for the Exercise for Life Scholarship.

 

Join Team Boomer Today

Team Boomer Donor Sheet

Team Boomer Pledge Sheet

Team Boomer Sponsor Sheet

TITLE: Understanding CF Lung Therapies

Dr. Joan DeCelie-Germana, director of the CF Center at Schneider Children’s Hospital in New Hyde Park, New York, and assistant professor of pediatrics at the Albert Einstein College of Medicine in the Bronx, New York discusses the importance in maintaining a consistent daily treatment regimen to manage lung disease.

· With the help of today’s CF lung therapies, CF patients are now living longer and more active lives than ever before.
· Pulmonary treatments, especially the standard therapies, are critical to helping CF patients stay as healthy as possible.
· For optimum health, it’s important to adhere to a doctor-recommended treatment schedule each day, and to take the treatments in the right order.
· A recommended order of daily treatment for a CF patient is Bronchodialator, Pulmozyme® (dornase alfa), The Vest or similar chest wall oscillator, and then TOBI® (tobramycin solution for inhalation), but your doctor will recommend the treatment schedule that’s right for you. Add-on therapies such as hypertonic saline may be appropriate for certain patient populations.
· Getting regular physical exercise and following a nutritious, high-calorie diet are also important for maintaining good health.

 

Title: CFRI TEEN & ADULT DAY RETREAT

The CFRI Retreat is August 6th and 11th in Menlo Park, California for teens, 15-18 years and adults with cystic fibrosis, their family members and health care providers. The event is fun, educational and a safe environment to meet some great friends!


The retreat provides a safe and welcoming environment aimed at enhancing positive coping skills, social support and education for people who share common experiences with CF.

Activities include daily exercise, arts & crafts, rap sessions, and educational workshops with guest speakers.

Cost is $65  per person for entire week.

Scholarships available.

Safety is a top priority: ALL people with CF are required to comply with cross infection behavioral precautions. A medical advisor is available at all times, and volunteers are available to assist with respiratory treatments.

For more info: http://www.cfri.org/home2.html

Title: Emily Schaller “Rocks CF? through rock & roll music…

1. Emily Schaller is 24 years old with cystic fibrosis and living in Detroit, Michigan. Emily believes her goal in life is to “spread awareness? about cystic fibrosis and is doing so in her rock and roll band. www.letsrockcf.org .Emily was diagnosed at 18 months
2. “I attended CF camps when I was younger but they were shut down due to cross contamination… so now people with CF go to cystic fibrosis chat rooms? states Emily.
3. “Time management? is Emily’s biggest challenge due to all the therapy compliance.
4. Emily is allergic to most medications therefore needs to be in hospital for iv antibiotics vs. home care.
5. Emily’s passions include rock & roll and Broadway shows.
6. Activities such as drumming and jogging help keep Emily healthy.
7. Emily is a drummer in a rock & roll band called “HELLEN? and her brother Jason is also in a band called “SOUTH NORMAL?.
8. Detroit Rocks CF is a group of 12 local bands that play music for a worldly cause and have a benefit for CF called “Just Let Me Breath?
9. Let’s Rock CF music cd available at: www.letsrockcf.com.
10. “Keep going… stay active… play in a band or play sports… and live your life to the fullest…? Emily’s advice to others with CF.

 

Living Breathing Proof

Celebrating my 50th Birthday !

Remember - Compliance, Nutrition, Exercise and Determination are the keys to having  a great quality of life with cystic fibrosis

Exercise For Life CF Athletic Scholarship

Presented by the Boomer Esiason Foundation

Details Coming Soon!

Schneider Children’s Hospital of North Shore LIJ Health Systems CF Nurses

Title:

CF Nurses “embrace patients and family? and form a “partnership?

Jerry Cahill interviews CF nurses, Lynn Bonitz and Susan Galvin, from Schneider Children’s Hospital of North Shore LIJ Health Systems in New Hyde Park, New York. Lynn and Susan have over 22 years of experience in nursing (12 in the world of cystic fibrosis) and maintain a “positive attitude?.

• Lynn and Susan are part of a phenomenal “TEAM? at the large CF Center at Schneider Children’s of North Shore LIJ Health Systems that has over 200 pediatric patients and over 80 adult CF patients.
• A typical day in the life of a CF nurse: “we spend ½ of the day seeing patients in clinic followed by team meetings, phone triage, insurance issues, clinical studies, and involvement in emergency cases? states Lynn and Susan.
• “What I like most about the job is working with the patients and their families? states Lynn
• “The patients are always positive and very resilient? states Susan.
• Challenges with infants: “the educational process for the family it is a long-term process? states Lynn
• Challenges with adolescents: “having patients take control of their care and NOT abandoning care? states Susan.
• Challenges with adults: “ Learning to maintain a balance in life?
• Advice: Lynn and Susan both recommend that patients should have a case manager at their insurance company. “Case managers can make things go very smoothly?
• Goal: “We strive to give the best care and help our patients in every way we can and not treat them like medical records?
  

Title: Richie Keane recommendation to all people with CF: “Stay Clear?…

Jerry Cahill interviews Richie Keane who is 49 years old and “loving and respecting life? Richie grew up in Long Island, NY and is one of 9 children (3 out of 9 have CF – one sister Valerie passed away and Jen Davison is doing well and recently did a podcast)

- Richie grew up in Baldwin, NY.
- Diagnosed at birth “I was a purple baby?
- Richie was very active growing up playing football, baseball, and golf.
- “I started getting sick around 18 years of age and had pancreas surgery at age 30? states Richie.
- The biggest challenge Richie faces is that his breathing has gotten tougher, the complications that develop from CF, and all the time involved doing medications.
- Complications that Richie has experienced include: diabetes, pancreatitis, and osteoporosis (broke over 30 ribs)
- Richie states: “living with CF is tough but I love life and CF has taught me to respect life?
- Richie has been married for 18 years to his wonderful wife Maryanne – she is a “special person? he states.
- Listed for a double lung transplant Richie’s dog “gets me off my butt? and keeps him active prior to transplant.
- Richie’s advice: “keep your chin up, enjoy life, and take the time to get your lungs moving to keep them clear?

Title: April Biggs “Keeps on Dancing? after Double Lung Transplant

April Biggs is 31 years old and received the gift of a double lung transplant on August 15th 2004 at New York Presbyterian Hospital in New York City.

-     April grew up in Jacksonville, Florida and was diagnosed with cystic fibrosis at one years old.

-     Growing up the doctors told her parents “Treat April like a healthy person and to live as fully as she can?

-     April started dancing at 5 years of age and is still dancing and choreographing post transplant.

-     April attended Florida State University.

-     “CF causes a lot of alienation due to the fear of catching germs from others with cystic fibrosis and that’s a drag? states April

-     “People with CF have a strong will to live and usually do pretty well getting through lung transplants? states April

-     “My family is a GREAT support system? states April

-     April’s FEV’s dropped from 85% to 30% and had a lot of hemoptosis which expedited the need for a transplant.

-     April’s recommendation to anyone with CF and anyone facing a lung transplant: “exercise and if you can’t run, walk!? also… “live your life to the fullest and do it!?

Title: CFRI (Cystic Fibrosis Research Inc.) A great organization!

CFRI is a very caring and committed organization to cystic fibrosis

- CFRI started 31 years ago by parents of children with CF to give support and raise money locally on the west coast for research and to make a difference for people living with CF.

- Carroll Jenkins, Executive Director, states: CFRI is a small group of 4 people and a few volunteers that wear many hats.

- CFRI address: 2672 Bayshore Parkway, Mountain View CA 94043

- Phone: 650-404-9975

- http://www.cfri.org

- cfri@cfri.org

 

- Mission Statement: Cystic Fibrosis Research Inc. exists to fund research, to provide educational and personal support, and to spread awareness of cystic fibrosis, a life-threatening genetic disease.

- Carroll Jenkins states: We believe in the value of collaboration with other organizations for one cause, and each organization can build on each others strengths. 

- CFRI does both educational and fundraising events

1.) 19^th Annual Educational Conference: August 4^th- 6^th,  2006, a three day event for adults with CF, caregivers, researchers, health care providers, family members, as well as the non-research community. Focus for this year's seminar: THE CYSTIC FIBROSIS JOURNEY: ALL AGES, ALL STAGES

2.) Teen/Adult Day Retreat: August 6^th - 11^th 2006, for individuals with CF and their significant other. The goal is education, support, and fun

3.) 22^nd Annual Golf Fundraising Tournament: August 7^th 2006 @ Cinnabar Hills Golf Club, San Jose CA.

4.) Mother's Day Tea: May 14^th 2006. Ã Warmest appeal to connect people and the largest avenue of fundraising for CFRI.  You can get more info and donate at: cfri@cfri.org or call: 650-404-9981

Carroll Jenkins states:  I am honored to work with CF. People with CF are amazing, not only do people with CF appreciate and value life, they appreciate the moment.

Bonnie Strangio $2500 Education Scholarship

Application Deadline: June 30, 2006

The Bonnie Strangio Education Scholarship was established in 2005 to honor the memory of Bonnie Strangio. The scholarship will be awarded to a person living with cystic fibrosis who, like Bonnie, has an upbeat personality and a "can-do" attitude and shows a tremendous passion for life in achieving their goals despite battling CF.

Bonnie loved life and everything in it. She appreciated family, friends, and people in general. She always offered a patient ear to listen to friends. Bonnie held a B.A. in Psychology and Masters in Teaching that took her down the career path of a special education teacher in a New Jersey high school where she focused on allowing learning disabled students to integrate in mainstream society. Strong, brave, and giving, she never felt sorry for herself but strove to make the best of everything. Everyone, young and old, loved her!

CRITERIA
An undergraduate or graduate student who has cystic fibrosis and whose service and commitment to the prevention and cure of cystic fibrosis is exemplary.

SELECTION PROCESS
- Candidate will complete an application.
- Candidate will submit all necessary documentation including:
- Essay on post graduation goals.
- Recent photo.
- Letter from physician confirming CF diagnosis.
- Most recent W2 form verification for both parents.
- Transcript (high school, college, or graduate).
- Letter of acceptance from academic institution.
- The committee will choose finalists who will be interviewed thereafter.
- The award recipient will be chosen by a majority vote.


SELECTION TIME PARAMETERS
Fall term

APPLICATION
Available at the Boomer Esiason Foundation web site: http://www.esiason.org

Available at: http://www.cfscholarships.com/bonnie_strangio_scholarship.html


CONTACT

Boomer Esiason Foundation
c/o Jerry Cahill
417 Fifth Avenue, 2nd Floor
New York, NY 10016
Phone: 646-344-3661
Fax: 646-344-3757

EMAIL QUESTIONS TO: jcahill@esiason.org

NO LIMITS!!!!


Jerry Cahill interviews Jennifer Davison who is 37 years old and living strong, succeeding and NOT letting cystic fibrosis get in her way. Jennifer grew up in Long Island, New York and is a registered nurse at Long Island Jewish/North Shore Medical Center.

1. Jennifer is one of 9 children, 3 with CF.
2. Jennifer attended Fashion Institute of Technology (FIT) and after working in the fashion industry decided to focus her career in the health field of nursing
3. Married to Tim and with a beautiful daughter – Dara – Jennifer “juggles 3 jobs - career, family, and health?
“I was treated NORMAL growing up – with a big family there was no time to feeling sorry for yourself? states
4. Jennifer “we just got off our butt and lived?
5. Jennifer’s first hospitalization came at age 17 years old.
6. “Being active is the key to good quality of life – I ski, play racquetball and ride my bike? states Jennifer.
7. Jennifer states: “CF is part of who I am but does not define me?
8. “CF does NOT stop me from living – I just get out there and LIVE?
9. Jennifer recommends that ALL people with CF should “get up at out and enjoy life and do not put restrictions on yourself?

On March 11, 2006 the Boomer Esiason Foundation held it's 13th Annual Booming Celebration. The Booming Celebration is one of the largest single event cystic fibrosis fundraiser in the USA with over $3,000,000 raised to help fund CF research in one night. Congratulations to Steven M. Bowman 2006 Boomer Esiason Foundation Most Valuable Player.

Sacks for CF Scholarship Program 2005 Winners

Sacks for CF will award scholarships to the following 15 people with CF who are striving for therapy adherence and academic success.

 

 

 

Sacks for CF is a scholarship program funded by CHIRON CORP. the makers of TOBI for inhalation.

Congratulations on a job well done!!!

 

 

TITLE: Exercise for Life

Jerry Cahill, 49 with cystic fibrosis, discusses the importance of exercise and explains the “gadgets? he uses while jogging.

1. “The single most important therapy in my life that keeps me healthy is exercise? states Jerry

2. Jerry believes that being outdoors in the fresh air is much better than being locked inside on a treadmill

3. “I try to exercise outdoors even when I am on IV antibiotics as it helps clear out my congestion?
Jerry jogs with a small oxygen tank, prescribed by his doctor due to shortness of breath. I use a “camelbak? backpack that is       normally used by bikers for hydration. http://www.camelbak.com

4. “I believe in training smart so I use a Polar Heart Rate Monitor to time my walking/jogging and keep track of my heart rate and exercise training zones. http://www.polarusa.com

5. “When I exercise I need to wear an oximeter that measures the oxygen saturation in your blood since my oxygen levels sometimes drop below 90%. The oximeter (WristOx 3100) keeps me in check so I do not hurt myself and get the full benefit of exercising my lungs, which are muscles and need to be worked? http://www.nonin.com

6. “I have been exercising and jogging since I was 9 years old and it has improved my quality of life living with CF. I believe everyone with CF can and should do some form of exercise daily – even if you start with walking and build up to jogging…?

Detroit Rocks Cystic Fibrosis !

Detroit Rocks CF is the first album put out by the Detroit run Rock CF Foundation. The CD features twelve of Detroit's finest rock bands. Each band donated one track to the album that will sell for $10. with all proceeds going to the Cystic Fibrosis Foundation.

1. The album will officially be released at this years Just Let Me Breathe benefit for Cystic Fibrosis.
2. This year's benefit show will be Friday, February 24th 2006 at the Royal Oak Music Theatre in Royal Oak, Michigan.
3. The idea for Detroit Rocks CF was thought of by Emily Schaller, drummer for the band Hellen.
4. Emily, 24, has cystic fibrosis, a genetic disorder that affects 30,000 Americans
5. Emily states: "The thought of bringing a dozen of the best Detroit bands together on one CD all in the name of CF is amazing! It means so much to me that the people of Detroit care and are willing to help such a great cause."
6. Visit www.letsrockcf.org for more information and to order a copy of the CD

Title: Reardon Runs With CF – Not From It!

Jerry Cahill interviews Charlotte Reardon and states “ I enjoyed meeting Charlotte – she is a selfless young woman that is full of passion and hope?

Charlotte is 20 years old with cystic fibrosis and is Living, Breathing and Running to stay healthy. Currently attending the University of Rochester in Rochester, NY and studying psychology in Austria for the spring semester.

1.    Charlotte grew up in Olney, Maryland and was diagnosed at 2 weeks of age and has 3 sisters.
2.    In the hospital a lot for iv antibiotic therapy during grade school, Charlotte also had a feeding tube inserted in 7th     grade.
3.    After some of her CF clinic friends died – Charlotte decided to “take control of her disease?
4.    “Exercise is my main form of therapy? states Charlotte.
5.    Ms. Reardon attributes her success to her father, John Reardon, who first pushed her into running.
6.    “In all honesty I’m kind of in denial,? states Charlotte. “I like to think of myself as someone who’s healthy. I have CF, but at the same time I am determined to do anything I want to do?
7.    “CF is a cross in life but it made me tough!? states Charlotte.
8.    Charlotte believes “Doctors need to stress exercise to their CF patients and everyone with CF needs to get out there and do something?
9.    ‘Breathing [while running] is harder for me than it is for other people, Reardon said. But the more running I do, the easier I can breathe and the better I feel.?
10.    Charlotte’s advice to others with CF “Don’t let it stop you – just get out there and live!?

Pictured on Right (Left to Right) Jerry Cahill with Lisa Yourman, Dr. Joan Germana and Boomer Esiason.

 

 

 

Heroes of Hope Award Photo Gallery

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Heroes of Hope – Living with CF

49-Year-Old Brooklyn, New York Resident with Cystic Fibrosis Receives National Award

The Heroes of Hope TM Living with CF Program Advisory Panel is pleased to announce Jerry Cahill as the January 2006 award recipient in recognition of his positive attitude and tenacious spirit, The Heroes of Hope program honors people with cystic fibrosis (CF) who give hope to others. Jerry was chosen from a nationwide pool of candidates for his ability to inspire others with CF through his positive attitude, commitment to proactively manage his health, determination, community outreach, and achievement.

Jerry states:
“I wanted to thank the Heroes of Hope Committee and Genentech – makers of Pulmozyme – for this honor?

“I also wanted to thank my family, friends, doctors, and the Boomer Esiason Foundation for ALL your support?

“I share this award with every person with cystic fibrosis that is living, breathing, and fighting everyday to win the battle with this disease?


For questions regarding the Heroes of Hope – Living with CF program, please call 1-866-288-1893
Or visit the web site: http://www.pulmozyme.com/hoh/hoh_landing.jsp

Jerry's Speech

HEROES OF HOPE (Living with CF)

I wanted to thank the HEROES OF HOPE Committee and Genentech – makers of Pulmozyme - for this honor…

I also wanted to thank my family & friends, doctors, and the Boomer Esiason Foundation for all your support…

In the past I have received awards for pole vaulting over 16’0? and increasing sales volume from $26M to $29M but it is a little eye-opening to get an award related to “living with a disease?… so I thought about it and looked up the definition of “HERO? in my Webster’s pocket dictionary.

Hero – one that is much admired or shows great courage.

This award needs to be shared with many…

1.) I share this with every person with cystic fibrosis that is living, breathing, and fighting for survival as it takes a lot of courage & work both physically and emotionally.

2.) My family, in particular my MOM, they are all heroes as they had to deal with a lot on a daily basis growing up…I remember being diagnosed at age 11 and the doctors telling my parents “you are lucky if your son lives to be 18 years old?, WELL… I am 49 and still here today and don’t plan on loosing the battle with CF any day soon. I owe a lot to my family because they never put me in a bubble and kept me very involved in sports – I thank you…

3.) My sister Laurie and friend Mike who help me out alot when I need extra physical therapy when I am sick and really should be in the hospital – thank you

4.) My doctors… I had and have many – one past away, one retired, and some never partnered up with me so I moved on

Dr. Schulman, who I have been with for over 7 years - he has been a great partner and deals with a lot of issues – he has his hands full with me as I am not an easy patient – I thank you, it’s a delight working with you as a doctor – I consider you a friend

5.) The Boomer Esiason Foundation for your support and giving me a “safe haven? by letting me volunteer and empowering me as I await a Lung transplant.

That leads me to the definition of HOPE...

HOPE – desire with expectation of fulfillment

In receiving this award, my hope is that PARENTS of children with CF will NOT feel guilty and NOT cover their loved one in bubble wrap but let them live life to the fullest!

And for individuals living with CF my hope is that ALL will be very compliant to there medications/therapies and get involved in VIGOROUS EXERCISE on a daily basis.

I believe, that through daily exercise, everyone with cystic fibrosis will be LIVING, BREATHING PROOF that can have a full and productive life while we wait for a cure.

THANK YOU

Sacks for CF Scholarship Program 

• Sacks for CF is a scholarship program funded by CHIRON CORP. – the manufacturers of TOBI® for inhalation.
• Jerry states: “TOBI® has made a major impact on treating respiratory infections and has given me a better quality of life?
• CHIRON CORP has given a charitable grant of over $170,000. To the Boomer Esiason Foundation Grant Program.
• Sacks for CF will award 15 scholarships to people with CF who strive for therapy adherence and academic success.
• Scholarship details and applications are available at: www.sacksforcf.com

More information is available by visiting the Boomer Esiason web site: www.esiason.org
Deadline for ALL applications: Friday, February 24th 2006
Winners announced: Friday, March 10th 2006

Alison Cain Podcast


Title:
Allison Cain can finally breathe after transplant and no more “CF boot camp?


Jerry Cahill interviews Alison Cain who is 34 years old and had a double lung transplant at New York Presbyterian Hospital in NYC 1 ½ years ago due to progression of cystic fibrosis. Alison grew up in Connecticut and has returned to work teaching high school Spanish.

- Alison was diagnosed at 1 ½ years of age due to a “strange cough? and “failure to thrive?
- Alison attended Fordham University in New York.
- Sports kept Alison healthy for a long time prior to transplant: “I was a competitive swimmer from age 4 to 13 years of age. I also played soccer, softball, and ran cross country track?
- Alison was never hospitalized for cystic fibrosis until the age of 19.
- At age 28 Alison developed CF related diabetes.
- June 16, 2004 Alison had a double lung transplant that lasted 6 hours and was hospitalized for 10 days.
- Alison believes, after many years of battling CF, that a transplant is the only true cure for CF and that her life is so much happier now.
- Alison’s advice: “Be compliant to therapy/med.’s and don’t give up hope.