As an Advocate for CF, I let my members of Congress know how they can
support efforts to find a cure and control for CF. The more they hear from
the CF community, the greater the impact we can have on funding for CF
research, access to quality, affordable health care, and public awareness
for this disease. Join me by signing up as a CF Advocate. You will receive
monthly updates on CF-related legislative developments and have the
opportunity to tell your members of Congress how CF affects your life.
Together, we can make a difference for people with CF.
Click on this URL to take action now
http://capwiz.com/cff/taf/
When we found out that Lindsey may have CF and got past the first visit to
the childrens hospital, Cris and I discussed the importance of being
advocates for CF because whether Lindsey had it or she was just a carrier it
will be a part of her life and part of her future when she decides to start
her own family. Now that we know she has it I really feel like it's
important for us to become educated on CF and educate all of our friends and
family as well. Research is not funded by the government at all for CF, we
need to help change that. All research that goes into CF is privately
funded through donations, it needs more attention not just for Lindsey but
for everyone that is affected by this disease. If you want to learn more
about people that live with this disease you can visit this webiste
http://www.cysticfibrosis.com/cftube/index.cfm . You can also learn more at
www.cff.org There are different degrees of the disease and they can't tell
you how one will be affected or when - this is what scares me, the unknown
and the what ifs... I will not lose hope though and Lindsey is still the little sweet pea we welcomed into this world just a couple months ago~ I hope they will learn that a person can have the genes and be well always, living a very long life!
Love from our family to yours,
Cris, Lisa, Carley, Emily, & Lindsey
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2 comments:
I came across your blog through Google alerts. My little granddaughter has CF. She's 27 months old. So far she has been very healthy. I am so glad that you are becoming active in spreading the word about CF.
Thanks for stopping by. I'm so happy to hear your grandaughter is doing well and has been very healthy. My baby is going on 3 months old and she hasn't had any signs or symptoms of CF, hopefully she never will. Was your grandaughter sick when she was diagnosed or did they learn she had CF from a newborn screening? Here in California they have only been doing the newborn screenings for CF for about 14 months, dont' know how long they have been doing it in other states. I ask everyone I talk to to visit the CFF.org website and send a letter to congress to support research to find a cure for CFF, hopefully our girls will get that cure early in their life. :)
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