54 Years Old and Living-Breathing Succeeding With Cystic Fibrosis
Give the Gift of Life New Page 2

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.

Category:general -- posted at: 7:58pm EST

Bonus Episode #0045: Sean Hunter Presents The Night Before Christmas
holiday ribbon
To everyone who loves football, Christmas and children.
 
A special podcast presentation of the classic Christmas story
The Night Before Christmas
has been added to the Boomer Esiason web site.

www.esiason.org
&

Jerry Cahill's Cystic Fibrosis Podcast
 
 
What we do want you to know is that it is OK to download this pod cast to your computer and to CDs without any cost or violation.  In fact, we encourage you to do so.  
Christmas is a special time, and the hope is that you can help others enjoy sharing Christmas memories and traditions with their family, neighbors and friends. 
So please,
be part of the Christmas spirit, enjoy the special recording, 
and pass the world along.
 
                                                        Always the best,
 
                                                                          Sean Hunter
Direct download: Wholeshebang02.mp3
Category:general -- posted at: 3:27pm EST

Episode #0044 Cystic Fibrosis.com Celebrates 10 year Anniversary. 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!!!!
Direct download: CF-12-1-06-JeanneBarnet.mp3
Category:podcasts -- posted at: 4:39pm EST

Episode #0043  Rob Safuto's New York Minute Podcast  - Mr. Dennehy's Party Coverage

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.

Direct download: New_York_Minute_64.mp3
Category:podcasts -- posted at: 6:30pm EST

Episode #0042 Sarah Katopodis Interview 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
Direct download: CF-11-17-06-SarahKatopodis.mp3
Category:podcasts -- posted at: 2:17pm EST

Joe Kelly Runs NYC Marathon for Team Boomer 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
Category:general -- posted at: 8:50pm EST

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

Category:general -- posted at: 2:34pm EST

Episode #0041:  Isabel Stenzel-Byrnes Interview 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

 

Direct download: CF-10-13-06-Isabel-Stanzel-Byrnes-Interview.mp3
Category:podcasts -- posted at: 7:08pm EST

CF Education Day comes to NYC 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
Category:general -- posted at: 10:04pm EST

Running With Team Boomer

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

Category:general -- posted at: 3:45pm EST

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