What would you do if you got the call that your
newborn baby had a life-shortening disease?
That your child would suffer for years…take too many medications to
count, and still be told they would lose the battle before they turned forty?
What if you got that same call two years later
with your second child?
It’s a sobering feeling. You look at your babies and wonder how long
they’ll be with you. You pray every day
that God will give them a long, healthy life and that SOMEDAY, a CURE will be
found. And you do EVERYTHING you can to
Each spring, we reach out to you to join us in
this fight. It’s getting harder to
ask. It’s getting harder to come up with
new ways to raise money for a cure. But
when I look at Sophia & Savannah, I know that I’ll never give up! I’ll never give up the fight that will give
them an amazing life. Because that’s
what parents do. That’s what you do…isn’t
it?….if you got that call?
Please join us…fight with us….because someday, we
Please read on for more information about the
disease, the foundation, progress in treatment, Sophia & Savannah’s
stories, and why we need your help. Your
gift is 100-percent tax deductible and will be used to support life-saving
research and medical progress.
IS CYSTIC FIBROSIS?
Cystic fibrosis is a genetic disease that causes
the body to make a thick, sticky mucus that clogs the lungs and other organs,
such as the pancreas. In the lungs, this
mucus leads to many infections and damages the lungs.
The mucus blocks the pancreas, so digestive
enzymes do no reach the intestines to help break down and absorb food. People with CF have trouble gaining weight
even with a high-fat, high-calorie diet.
Most CFers look healthy from the outside, but CF
is destroying their organs on the inside.
CFF is not funded by any government agencies, and
the organization has been recognized as a top charity by many independent firms. $ .90 of every $1 donated is dedicated to
research. The only way the cystic
fibrosis community has made progress with this important research is by private
donation. YES, your donation really does
make a difference!
CYSTIC FIBROSIS FOUNDATION
The war on cystic fibrosis began in 1938. In 1955, the foundation became incorporated
as the National CF Research Foundation and awarded the first research
grants. In 1961, the foundation
developed two accredited care centers devoted to treating CF; by 1962, that
number had increased to thirty centers.
During the 1960’s, the foundation launched a patient data registry. The CFF now maintains 100 centers. The average survival age for a person with
cystic fibrosis in 1962 was 10 years old.
Just last year it was 37 and today it is 50!
There are many different mutations of the CF gene;
therapies which work well for certain mutations are ineffective against
others. In the past three years, the FDA
approved KalydecoTM to treat people ages 6 and older who have one of
nine cystic fibrosis mutations. Kalydeco,
a breakthrough therapy, is the first drug to treat the underlying cause of
cystic fibrosis rather than improving symptoms.
Kalydeco is now approved for people with the
following mutations: G551D, G178R, S549N, S549R, G551S, G1244E, S1251N, S1255P,
and G1349D. These nine mutations account
for just 1,400 of the 30,000 Americans living with cystic fibrosis.
Other treatments include: chest physiotherapy,
nebulized medications, pancreatic enzymes and vitamin supplements, nutritional
supplements such as PediaSure, acid reducers, laxatives, oral and inhaled
antibiotics, the list goes on and on!
Both girls have two mutations of the CF gene, one
from each parent (Delta F508, the most common and more severe type, and G551D,
the “good” CF genetic mutation which can be treated with Kalydeco).
Sophia and Savannah begin and end everyday with breathing
treatments and 30 minutes of chest physiotherapy. If either girl gets congested, she will do
both treatments and therapy four times a day.
Along with a concoction of medications taken throughout the day, this is
their “norm.” They fight every day to
just be “healthy.” To look at either
girl, you would never know they were sick.
They are like any other playful, energetic kids-they just happen to live
Last year, Sophia entered kindergarten. Although she was beaming with excitement,
being exposed to so many germs has added a new threat to her and her
sister. Because the lungs of those with
CF do not function properly, what could be a simple common cold for a child
without CF could turn into a serious, life-threatening infection for the girls.
We are currently (anxiously) awaiting FDA approval
for Kalydeco for children ages 2-5!!!
Once the girls are able to take Kalydeco, their lives are predicted to
change for the better! If they respond
to the medication, treatments may be significantly less, medications will
lessen, weight gain will be much easier, and their life expectancy will be
CAN YOU DO?
DONATE! Donating online is easy and secure!
WALK WITH US! Search for a walk near you…we currently have
15 teams across the United States and Canada that walk for Sophia and Savannah!
LEAD A NEW TEAM! Last year we had three new teams! Let us know if we don’t have a team in your
SHARE OUR STORY! Write a letter to your friends and family
explaining how important Sophia & Savannah are to YOU…then ask them to
help! Invite them to our team page to
Whether you are praying for a cure, praying for Sophia & Savannah’s
health, praying for our strength in this daily fight…you are making a difference!!
FUNDRAISE!! We had several new fundraisers led by our
friends and family last year, and we raised the most money to date!! We can help you brainstorm and turn your
favorite hobby into something that will raise awareness and funds for the
Cystic Fibrosis Foundation!!!
YOU FROM THE BOTTOM OF OUR HEARTS!!
Jackie, Bryan, Sophia & Savannah
Connect With Us
Important note on Attendance at Foundation Events:
Infections can exacerbate CF symptoms and worsen lung function, so we ask attendees at Foundation-sponsored events to observe the following best practices to reduce the risk of germ transmission:
Regularly wash hands with soap and water or with an alcohol-based hand gel.
Cover coughs and sneezes with a tissue or your inner elbow.
Maintain a safe 6-foot distance from anyone with a cold or infection.
To further reduce the risk of cross-infection, the Foundation’s attendance policy recommends that all people with CF maintain a safe 6-foot distance from each other at all times while attending an outdoor Foundation-sponsored event. All Great Strides walks are non-smoking events.