Back in
December 2014, the CF Foundation announced a $15 million research initiative
with biopharmaceutical company Shire which will support the development of a
new cystic fibrosis treatment targeting the underlying cause of the disease.
This is a BIG deal and oh so important! Praise the Lord!
Members of the House and Senate have introduced the
Ensuring Access to Clinical Trials Act of 2015, which would make
permanent a law that allows those with rare diseases, like cystic fibrosis, to
participate in clinical trials without fear of losing vital benefits. However,
the act is set to expire this October! As a result, the CF Foundation urges
people to make their voices heard in order to help make the Act a permanent
law. Please click the link below to let the people who run this country know
how important this is for many people!
Link: Help Support the Act!
As innovative new treatments are
developed, it is vital that all people with CF and
other rare diseases, have the ability to participate in clinical trials without
fear of losing their benefits.
Now, as for me and my
health lately... well, winter stinks and I can’t go outside. So as soon as the weather breaks and the sun
is shining again, I’ll be out there soaking up the sun! (Maybe that will
help my Vitamin D deficiency…).
I’ve been coughing
pretty rough in the morning for a few hours then it seems to calm down
some. I’ve been keeping up with my
Pulmozyme Nebulizer treatments and Vest treatments daily (go me!). Staying away from sick people and places
seems to be helping some too. Kids this
year seem to be sick all the time! Sorry
I haven’t seen some of my family or friends lately because of it… L.
My last appointment
was supposed to be in February, but due to the weather’s behavior, I had to reschedule
for March. Hope I don’t catch a cold
from being there when I go!
As usual, thank you
for taking the time to read. I appreciate the thoughts, prayers and messages.
Patiently waiting for
summer,
Jen