Ben's Brigade is getting ready for the Great Strides walk in SLC!
Please help us fight CF by purchasing a shirt or making a donation.
Your contribution will help fund research that is bringing us closer to
finding a cure and adding tomorrows for Baby Ben and many others.
For a hoodie, please click here.
In
May 2013, at 6 weeks old, our sweet Baby Ben was diagnosed with cystic
fibrosis, a chronic (terminal) genetic disease that affects the lungs
and digestive system. The median life expectancy for someone with CF is
only 41 years. There is no cure.
Every day Ben has to take medication to help his body function
properly. At 9 months old he takes about 20 pills a day (two with every
meal or snack) so his body can absorb and break down the nutrients in
his food. He has to do two breathing treatments every day, followed by
20 minutes of chest physiotherapy each time—and that’s when he’s not
sick. He takes special vitamins every day, as well as reflux medication
that helps his stomach process all of his meds. Ben also needs extra
salt each day, since CF makes his body lose salt more quickly.
But Ben doesn’t let CF get him down, and we try to follow his example. He is a happy baby boy who loves
his big sister and his dog. He loves dancing to music, bouncing, and
trying to escape through the dog door. When we take him to football and
basketball games at the high school, his excited clapping and
incredible flirting skills have even been known to distract the
cheerleaders from their job!
You can help us keep Ben happy and healthy. Research funded entirely
by the Cystic Fibrosis Foundation has led to groundbreaking drugs that
are showing so much promise in the treatment of the disease. For the
first time, there is HOPE that a cure is finally on the
horizon. However, curing CF is not considered profitable enough for big
pharmaceutical companies, so it is only through grass-roots campaigns
and fundraising events like Great Strides, merchandise sales, and
generous donations from friends and family that this research has been
funded.
There are approximately 1800 known mutations that cause CF, and these
promising new drugs only work on 4% of them so far. Clinical trials
are going on right now for Ben's specific mutation combination, so it's more important to us than ever that this research continue.
Please take this opportunity to be a part of this incredible
research, and join us in our efforts to help find a cure for cystic
fibrosis, by purchasing a shirt or making a donation to the Cystic
Fibrosis Foundation.
We can't thank you enough for your support.
Smokey, Steph, Marley, and Ben
Supporters
Just want to help.
Ben is my great-nephew. We are helping to find a cure for this disease through our support!
Cool shirt design, even cuter baby. Research needs to be funded until there's a cure.