Julia
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This page is in honor of my 11 year old niece Julia who was diagnosed with Cystic Fibrosis 3 days after she was born in 1999. Since her infancy, she has battled this disease with a diet full of medication, enduring daily physical treatments, and endless trips to Childrens Hospital. That said, you would be hard pressed to ever find her without a smile on her face. One of my primary objectives in running the marathon is to raise money for the Cystic Fibrosis Foundation (CFF) so that she will still be smiling when she is 29,49,69 & 89. With our help, I know that will happen!
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 Donations. CFF.org has finally updated their system and have created a donation page for me that you can use to donate. The donation goes directly to their system which I have used for the last ~8 years to donate to the CFF so you can feel confident it is "secure". All donations are sincerely appreciated. Thank you very much! To donate, please click on DONATE (above) which will take you to my donation page at CFF.org's website.
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The Cystic Fibrosis Foundation (www.CFF.org) leads the way in supporting research to help find a cure for CF. Established in 1955, it's contributions have been responsible for numerous groundbreaking advances in the treatment of the disease. It is an extremely well run charity and the independent website Charity Navigator gives it their highest 4 Star rating. In addition, it has an extremely low administrative cost of 3.7% which means that vast majority of all donations go to research!
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What Is Cystic Fibrosis (CF)? Like most people, I had heard of the disease and knew that it somehow affected the lungs. Beyond that, I didn't really know the specifics of it. Here's how the CFF describes it:
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections. In addition, it obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond.
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Statistics of CF (again courtesy of the CFF):
- About 1,000 new cases of cystic fibrosis are diagnosed each year.
- More than 70% of patients are diagnosed by age two.
- More than 40% of the CF patient population is age 18 or older.
- In 2006, the predicted median age of survival was 37 years.
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Symptoms of Cystic Fibrosis Although quite rare now, in some instances people with CF have gone undiagnosed until they are older, assuming that their respiratory problems were related to asthma, allergies, etc. Below are the most common symptoms of CF:
- Very salty-tasting skin.
- Persistent coughing, at times with phlegm.
- Frequent lung infections.
- Wheezing or shortness of breath.
- Poor growth/weight gain.
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Great Strides. All of the pictures, with the exception of the top one that I took in 2002, were taken at CFF's Great Strides Walkathons which are held in numerous communities throughout the US, usually near the middle of the month of May. Since Juia lives on Cape Cod (the "arm" that sticks out from the eastern side of Massachusetts) we walk in Hyannis, right along the ocean. Click on the above link to find a location close to you to either donate or participate! BTW, to see the full image of any picture, click on it.
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