The 7th annual Great Strides for Cystic Fibrosis (CF) walk is taking place on
Sunday, September 16, 2018 rain or shine at Vincennes University’s
track in hopes of raising money for research and awareness for Cystic
Fibrosis. Registration begins at 12:30 p.m. (EST) and the opening ceremony
starts at 1:30 p.m. There are expected to be 15 teams this year at the
walk with the goal to raise $80,000.
Cystic fibrosis is a life-threatening, genetic disease that causes persistent
lung infections and progressively limits the ability to breathe. In people
with CF, a defective gene causes a thick buildup of mucus in the lungs,
pancreas and other organs.
In the lungs, the mucus clogs the airways and traps bacteria leading to
infections, extensive lung damage and eventually respiratory failure.
In the pancreas, the mucus prevents the release of digestive enzymes that
allow the body to break down food and absorb vital nutrients.
Last year was not only a successful fundraising year for the Vincennes
Great Strides walk, but a successful year for CF medicine and research.
In fact, Senior VP of Therapeutics Development, Dr. Mike Boyle, described
2017 as the “pivotal year for matching medicines with people”
– a year in which we now have an expectation that by 2020, we will
have 93% of the CF population eligible for treatment with a CFTR modulator.
Last year, Kalydeco (Ivacaftor) expanded its label to 28 mutations meaning
more people than ever before have access to this therapy.
In addition to this excitement, CFF’s President and CEO, Dr. Preston
Campbell, announced news of a one-time cure at NACFC in November. During
the opening plenary, he reminded the audience that our mission is to
cure CF. The very exciting science of gene editing now allows us to plan and
dream for the day. Campbell stated, “No doubt, it’ll take
a long time, but our dream is that these treatments that we’re working
on now will allow someone to say ‘I used to have CF’. Then
we’ll be done.”
Donations have helped researchers find a major breakthrough in Cystic Fibrosis
by introducing a new drug, Symdeko™ this past February that improves
the function of the CFTR protein. Cystic fibrosis occurs when the CFTR
protein is either not made correctly, or not made at all.
The U.S. Food and Drug Administration approved Symdeko for individuals
with two copies of the most common cystic fibrosis mutation, F508del,
which causes the production of an abnormal protein that disrupts how water
and chloride are transported in the body.
Research and clinical trials have continued in 2018 demonstrating positive
results for those with CF. The Cystic Fibrosis Foundation maintains a
strong group of potential therapies that target the disease from every
angle. The more support given to the Foundation increases the odds of
producing successful therapies and a cure for all people with CF.
“2017 truly was a stunning year and we believe that it has been one
of the most significant years of scientific progress in our history,”
said Kaitlin Roberts, Administrative Manager for the Indiana Chapter Cystic
Fibrosis Foundation. “We are excited to continue 2017’s incredible
momentum into this year!”
“The CF Foundation is leading the way in innovative research and
drug development, promoting high-quality, individualized care, and helping
people with CF live better today,” stated Tammy Howell, Good Samaritan
Respiratory Therapist and Event Chair. “Nearly every CF drug was
made possible by the Foundation and because of funds raised from Great
Strides, people with CF are living longer, healthier lives and pursuing
Sandwiches, provided by Jimmy John’s, chips, cookies and drinks will
be provided for walkers. The committee will be putting on a bingo fundraiser
on Wednesday, August 15, 2018 at the Moose Lodge, located at 904 S. 17th Street in Vincennes. There will also be door prizes, food and a silent
auction, with approximately 80 to 100 items from local businesses and
Please call Tammy Howell at 812-885-3215 or 812-899-2146 for more details
and information about how you can be involved. To make a donation, join
a team, create a team or sign up as an individual walker, go online to
www.fightcf.cff.org/greatstrides and click on “find a walk/team”, then search