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Syndication


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?

Direct download: RichieKeaneInterview-05-30-06.mp3
Category:podcasts -- posted at: 8:11 PM

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!?

Direct download: AprilBiggs-05-11-06II.mp3
Category:podcasts -- posted at: 6:00 PM

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.) 19th Annual Educational Conference: August 4th- 6th,  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 6th - 11th 2006, for individuals with CF and their significant other. The goal is education, support, and fun

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

4.) Mother's Day Tea: May 14th 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.

Direct download: CFRI-05-03-06.mp3
Category:podcasts -- posted at: 7:17 PM

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