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Every Breath is a Gift

http://www.firstgiving.com/beckacouret

Page Creator: Rebecca Couret
Page Closes: May 1st 2008
In memory of: Gregory Joseph Blake
Fundraising Page Image
 
Every Breath is a Gift
About our charity:
Pulmonary Fibrosis Foundation
The Pulmonary Fibrosis Foundation is a non-profit corporation founded in the state of Colorado in 2000 by Albert Rose and Michael Rosenzweig, Ph. D., both of whom were diagnosed with Pulmonary Fibrosis (IPF). Dr. Marvin Schwarz was also instrumental in its creation. The national headquarters is located at 1332 N. Halsted St. suite 201, Chicago, Illinois 60622.  The Foundation is dedicated to providing the leadership and resources that have resulted in Increased Research, Improved Health, Early and Accurate Detection, and the Inspiration needed to Find a Cure for Pulmonary Fibrosis.

What is Pulmonary Fibrosis?

Pulmonary Fibrosis involves scarring of the lung. Gradually, the air sacs of the lungs become replaced by fibrotic tissue. When the scar forms, the tissue becomes thicker causing an irreversible loss of the tissue’s ability to transfer oxygen into the bloodstream.

What are the symptoms?

  • Shortness of breath, particularly with exertion

  • Chronic dry, hacking cough

  • Fatigue and weakness

  • Discomfort in the chest

  • Loss of appetite

  • Rapid weight loss

What is the prevalence of Pulmonary Fibrosis?

There are five million people worldwide that are affected by this disease. In the United States there are over 200,000 patients with Pulmonary Fibrosis. As a consequence of misdiagnosis the actual numbers may be significantly higher. Of these more than 40,000 expire annually. This is the same as die from Breast Cancer. Typically, patients are in their forties and fifties when diagnosed. However, diagnoses have ranged from age seven to the eighties. Current research indicates that many infants are afflicted by Pediatric Interstitial Lung Disease. At this time there is limited data on prevalence for this group.

What are the causes? 

Traditional theories have postulated that it might be an autoimmune disorder, or the after effects of an infection, viral in nature. There is a growing body of evidence which points to a genetic predisposition. A mutation in the SP-C protein has been found to exist in families with a history of Pulmonary Fibrosis. The most current thinking is that the fibrotic process is a reaction to microscopic injury to the lung. While the exact cause remains unknown, associations have been made with the following:

  •  Inhaled environmental and occupational pollutants

  • Cigarette smoking

  • Diseases such as Scleroderma, Rheumatoid Arthritis, Lupus and Sarcoidosis

  • Certain medications

  • Therapeutic radiation

How is it treated?

There are currently no effective treatments or a cure for Pulmonary Fibrosis. The pharmacological agents designed to treat lung scarring are still in the experimental phase while the treatments intended to suppress inflammation have only limited success in reducing the fibrotic progress.

Because the origin and development of the disease is not completely understood, misdiagnosis is common. Varying terminology and lack of standard diagnostic criteria have complicated the gathering of accurate statistics about people with pulmonary fibrosis. Supplemental oxygen improves the quality of life and exercise capacity. Single lung transplant may be considered for some patients. Pulmonary Fibrosis is a very complex disease and the prediction of longevity of patients after diagnosis vary greatly.

 

Fundraising target: $1,000
Amount raised so far: $150.00
 

 

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Our personal message:
Thank you for visiting my Personal Fundraising Page. Donating through this site is simple, fast and totally secure. It is also the most efficient way to make a contribution to our fundraising efforts. Many thanks for your support.

A little about my brother Greg

My brother, Greg, was diagnosed with Ideopathic Pulmonary Fibrosis when he was only 30.  Since it was Ideopathic, we have no idea how he came to have this horrible disease.  Greg was not a smoker, infact, he was very active. He received a single lung transplant on April 14, 2005.  He passed away on June 5, 2006 at the age of 37.  He lived longer than most IPF patients do.

 

 

 

 

Online donors to date:  
Display Name Date  Comment
Tracey 5/2/2007  
andrea 5/2/2007  
Abby 5/2/2007  
chris 5/2/2007 wishing you SO much luck, hon. 
 
Verisign secure site-- click to verify
 
Total raised online: $150.00
Amount raised offline: $0.00
Grand Total: $150.00


 


Since the untimely death of our dearly beloved Linda Bascom Taylor, I have been involved in the National Pulmonary Fibrosis Foundation.  I have made it one of my goals for the rest of my life to try and understand this horrendous disease and help find medication to help those diagnosed with Pulmonary Fibrosis, and someday a cure.  Today there are absolutely no medications of any kind available to retard, or reduce the progression of Pulmonary Fibrosis once you are diagnosed with this disease.  Today, this disease is always fatal and over 40,000 people die every year from this disease, yet hardly anything is known about it.  Part of the problem is that it is extremely difficult to diagnose and mimics many other diseases.  We, at the foundation, have set a goal to work on bringing national awareness about this disease to the public.

My fund raiser is going to be the publication of a recipe book made up of favorite recipes of my sister Linda, other family members and friends.  We are also going to include memory tidbits to personalize it.  The book will go into publication on June 1st and be available for sale on July 1st.  We are going to sell the book for $9.95.  I am underwriting the cost of publication so all proceeds from the sales will be donated to the Pulmonary Fibrosis Foundation from "The Family and Friends of Linda Bascom Taylor, in Honor of her Memory". 

Contact: Kathy Bascom at: 512-248-2838

or email: jcrichxl@hotmail.com

One hundred thirty five books have been sold 
as of July 15th, 2005



 



Golf Tournament Scramble

With a Shotgun Start

The Coworkers of Tammy Barnes, who is suffering from Pulmonary Fibrosis, are organizing this event on her behalf. For more information, contact: 

Mark Harris at 817-685-1545 or 

Scott Peterson at: 817-685-1534.

The date is: July 13, 2005
The time is : 1:00 PM

The location is: Texas Star Golf Course, Euless, Texas