Friday, March 9, 2012

CFF Annual Meeting

Last night I got to sneak away and eat pasta, drink wine and hear all the good things coming to the CFF! Fabulous combination for any mom to enjoy. All the buzz in the CF world is Kalydeco. Why? The CF Foundation is the FIRST GENETIC DISEASE EVER to be treated with an oral drug.

We ask for money all the time and I want to paint you a beautiful picture of all that money has and is doing.

47 % of CF patients are now OVER the age of 18. This number is living proof of the investment the foundation has made to research-this number is remarkable as it has more than doubled in recent years.

The CF Foundation has committed over 100 MILLION DOLLARS to research in 2012.
The Foundation has added an "interactive" Pipeline (the path a drug takes in order to be available to patients) on their website with details about where the study is at and what the results have been.

Here is where VX 770 (now Kalydeco) was last year. Now the bar has made it all the way to the end which means FDA approved!

You can view the Cystic Fibrosis Foundation Therapeutics Pipeline here.

Speaking of drug development, Dr. Beall CEO of the Foundation wasn't satisfied with the pace of new generation drugs being developed and so he took matters into his own hands purchasing a wet lab for the Foundation for their own personal use. The CF Foundation is the ONLY non-profit organization to do this. To achieve the goal of ultimately finding a cure, the CFF aggressively invests in drug development research with the most successful and innovative biotech companies and scientists in the world. They are attacking the disease from every angle. Other orphan diseases with smaller populations like CF have been coming to the Foundation to learn more about their business like model of doing research.

There's a lot of excitement, and rightly so, surrounding the news of Kalydeco. Simply put, it is a road map for the other mutations since this specific drug fixes the "easiest" mutation to alter.

Last, but certainly not least is the necessity for YOUR donation. The Foundation's largest source of revenue (60% exactly) comes directly from grassroots efforts such as the Great Strides walk and other local events put on by volunteers.

Please consider giving a financial contribution. Your money matters and is being well spent. No other non-for-profit can say that 90 cents of your dollar goes directly to research. That's HUGE! We would not invest so much of our time and energy if it wasn't for the motivation of the Foundation to keep sticking money into research...the ultimate way to reach a cure.

If there is nothing else to prove how awesome this foundation is. You need to look no further...

1700's-1930's:CF unidentified at the time) was popularized by the German saying, “A child whose forehead tastes like salt when kissed will soon die.”

1940-Life expectancy is less than a year old
1950-The Foundation is started by parents. Life expectancy is 2 years old.
1960-Life expectancy is 10 years old.
1970-Life expectancy is 16 years old.
1980-Life expectancy is 18 years old.
1990-Life expectancy is 29 years old.
In 1993 Pulmozyme was approved. All our kiddos use this nebulized drug once a day. It was very cutting edge at the time (and still is) as it is not an antibiotic or anti-inflammatory. Instead is targets the gene directly and "cuts" it up to thin the mucus production.

In 1997 TOBI was approved by the FDA. I'm sure all my blog readers are familiar with this one :)

2000-Life expectancy is 32 years old.
2004-Life expectancy is 35 years old.
2006-Life expectancy is 36 years old.
2008-Life expectancy is 37 years old.
2012-Life expectancy is 38 years old.

Life is precious. When you are faced with Cystic Fibrosis-time is short.
DONATE today! A cure starts NOW!

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