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 marathons is to raise money for the Cystic Fibrosis research so that she will still be smiling when she is 29,49,69 & 89.

An Angel On Earth
Julia at 2002 CFF Great Strides

DONATIONS: Effective July 8th, I am now officially registered to run the 2011 ING New York Marathon on Nov. 6th! Even though I was promised a free entry by ING (the chief sponsor of the NY Marathon), I have chosen to run for Team Boomer (Boomer Esiason Foundation) so that I can continue to raise money for Cystic Fibrosis research and show Julia just how much she means to me. If you would like to donate, please click on First Giving Donation Page below. ANY donation would mean a lot to me and to Jullia.

The Boomer Esiason Foundation is a dynamic partnership of leaders in the medical and business communities joining with a committed core of volunteers to heighten awareness, education and the quality of life for those affected by cystic fibrosis, while providing financial support to research aimed at finding a cure. Boomer Esiason was a star NFL quarterback in 1993 when he learned his young son, Gunnar, was afflicted with the deadly disease cystic fibrosis. Boomer and his wife, Cheryl, are strongly committed to supporting the critical research needed to discover a cure for CF and to improving the quality of life for the 30,000 Americans living with the disease. BEF works to directly affect the lives of CF patients around the country through scholarships and transplant grants to aid families.

2003 Great Strides
2004 Great Strides

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.

2005 Great Strides

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.

2006 Great Strides
2007 Great Strides

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.

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.

2008 Great Strides

2009 Great Strides

2010 Great Strides

2009 Great Strides Picture
2010 Great Strides Picture

2011 Great Strides Hyannisport May 22, 2011 (12 Years Old)

2011 Great Strides Picture
   Roger@RFME.org