54 Years Old and Living-Breathing Succeeding With Cystic Fibrosis
Episode #0091 CFRI Teen & Adult Retreat: August 3rd – 9th 2010

Maggie Sheehan, 22 years old with cystic fibrosis, talks about her great experiences attending the CFRI Retreat in Northern California. The retreat takes place off the beaten path under the “redwoods," just minutes from Stanford Hospital.  CFRI is a great organization that empowers the CF Community to attain the highest possible quality of life.

  • The CFRI Retreat has been in existence since the 1990s. Maggie has been attending for the retreat for five years, and scholarships are available.
  • “Activities at retreat include rap sessions, arts & crafts, sporting events, fun in the sun, and great food!” Maggie says.
  • To attend the retreat, you must be over 15 years old with guardian, and over 18 years old by yourself. Friends and significant others are welcome to attend and join in the fun.
  • The retreat is a very safe environment that follows strict guidelines regarding cross infection. Maggie feels that the retreat is “safer than the real world."
  • “My favorite part of the retreat is the sharing and the talent show at the end of the week,” Maggie says.
  • Maggie continues to return to the retreat because of the great friends she makes and the awesome connection to the CF community.  She feels refreshed at the end of the retreat.
  • For more info on the retreat call 650-404-9975, email cfri@CFRI.org, or visit www.CFRI.org


Direct download: MaggieSheenanInterview.mp3
Category:podcasts -- posted at: 3:27pm EDT

Episode #0090 Fundraising For A Cure

Gwen Shusterman discusses various ideas on FUNDRAISING for a cause.

This year Team Boomer – Fighting Cystic Fibrosis will have over 100 runners competing in the ING New York City Marathon - ALL will be running and fundraising for a cause.

Team Boomer – Fighting Cystic Fibrosis was set up through the Boomer Esiason Foundation to help raise funds for the fight against cystic fibrosis and raise awareness to the importance of exercise for people with CF.

Team Boomer’s goal is to improve the “quality of life” and “lifespan” of individuals with CF through the power of “daily exercise."  As therapeutic developments increase the lifespan of CF patients so does the need for further education in the area of exercise.

  • Gwen believes there is no secret to fundraising: “It’s an art and partly as science ... fundraising is personal so you have to do it in your own style."
  • “Come up with a game plan: First think of a target number and then think of EVERYONE you know who you can possibly approach,” Gwen advises.
  • Think outside the box. “People are going to surprise you. All those people I said to put on the list – the acquaintances, your kid’s friend’s parents, an old boyfriend/girlfriend, the person you met at a conference last month – they all add up," Gwen says.
  • Once you have your list together the next step is setting up a First Giving page: www.firstgiving.com/TeamBoomer.
  • “Next take your list and send out an email blast with your fundraising page info to ALL your contacts," Gwen says.
  • Other ideas for fundraising include special events such as happy hour at a local bar, golf events, school events, and many companies have “matching gift” programs.
  • Why can’t I tell people what my minimum is? “Really, if you entered this kind of event (marathon) then I doubt you’re the kind of person who just settles on the minimum,” Gwen says.
  • A lot of work? “If you mean does fundraising take time – yes it does! To be successful you have to personalize your story and it’s really important to start early!”
  • Final thoughts: “I think anyone who is willing to do something like join TEAM BOOMER is amazing. It takes a special person to make this kind of commitment. Use your passion. Good luck!
Direct download: GwenShusterman.mp3
Category:podcasts -- posted at: 4:21pm EDT

Episode #0089 Jerry Cahill - It's Not About CF

Jerry Cahill, 54 years old with cystic fibrosis, lives in Brooklyn, N.Y. Jerry is exercising with oxygen to keep his lungs clear, coaching and volunteering at the Boomer Esiason Foundation as he awaits a double-lung transplant. Jerry attacks the day and is living, breathing and succeeding with CF.

  • Jerry was diagnosed at age 10, and the doctors told his parents he would not make it to his 16th birthday.
  • “Growing up with CF is challenging, but you just have to push through ... it’s a discipline,” Jerry says.
  • Jerry loves being outdoors all year and exercises with a small oxygen tank, which helps him breathe better while he awaits a double-lung transplant.
  • “I believe in a complete program of being compliant to medications, good nutrition, exercise and a fun social life,” he says.
  • “Going out on disability is tough, but you just have to RE-INVENT yourself."
  • Jerry believes in “attacking the day and focus on living! I look forward to tomorrow and the next day, next week, and next year ...”

This “LIVING. BREATHING. SUCCEEDING.” Podcast/Vodcast is the 11th in a series of 12 made possible through an unrestricted educational grant from Genentech to the Boomer Esiason Foundation.


Direct download: Jerry10.m4v
Category:Vidcast -- posted at: 3:30pm EDT

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