You may remember me blogging about Tricia's Involvement in Clinical Trials...over the years, Tricia has and continues to give of herself and participate in hundreds of clinical trials that help with advancement of CF research.
Now, it's our turn to help make a difference in these CF clinical trials.
Cystic Fibrosis Caucus Co-Chairs Representative Edward Markey (D-MA) and Cliff Stearns (R-FL) will soon introduce a bill to help more people with CF participate in clinical trials.
Right now, because of eligibility rules regarding compensation for clinical trial participation, many people with CF are forced to choose between taking part in important clinical trials and keeping their health care coverage.
Many researches believe that a cure for CF is literally just a year or two away from us now, and as I have mentioned, there are a few drugs in development right now that promise to double the life of CFers. To help these promising drugs move swiftly from the research and testing phase to the people who need them, more people with cystic fibrosis are needed to participate in clinical trials. This important legislation will remove that barrier to allow more people to participate in clinical trials.
As an Advocate for CF, I let Congress know how they can support efforts to find a cure and control for CF by going to This Site and sending an email to my member of Congress, asking him/her to co-sponsor this bill. The more Congress hears 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.
Please, take a few minutes to Click This Link, send the email, and join me in becoming a CF Advocate. Once you arrive at the web page, you'll find that the email has already been written for you...you simply need to fill out a bit of personal info so that the email goes to your member of Congress.
If, when you get to the web page, you'd like to add a personal story about CF, please feel free to mention Tricia (or any other CFer you know) and the impact that her story has had on your life.
Thank you very much. I sincerely would appreciate your help with this. And, if you'd like, please, leave a comment here on my blog and let the world know that you've participated in this opportunity to advocate for those with CF. Together, we can make a difference for people with CF!
Nate
46 comments:
As a fellow CF spouse, I thank you for keeping us up on these types of things! I am headed to the link now.
Such an easy thing to do for such an amazing cause. I'm heading to that link right now :)
that's incredible. Thanks for this!
In Ohio we passed a law that would cover medical care for cancer patients participating in clinical trials. Let's do the same with CF!
Thanks for making your readers aware of this. Because of reading your blog, I now follow yours and two other blogs of CFers. I had a friend that died of CF but at the time I really did not understand the disease. You and Tricia do so much to educate people about CF. Keep up the good work!
We just got through with our CF walk last weekend. It was a nice day for our walk.
I sent the e-mail. Thanks for giving me the opportunity.
Email sent to Rep. Bennie Thompson (D-MS 2nd)
Glad to help!
Stacey in Missippi
I just sent it to my congressman in Oregon...
Sent, and happy to help!
Just sent the e-mail!
Happy to help. Sent the email.
I sent an email - that was easy....Thanks for the info.
That couldn't have been easier.
Stacey in Oklahoma
Done! Thanks for helping us use our voice to promote change!
I just did it. Thanks for letting us know how we can help.
Sent my email! Thanks for bringing attention to this!
I just sent my e-mail. Hoping and praying our voices will be heard on this very important subject.
Just sent an email, and was glad to do it. :)
Thank you for letting us know of this opportunity. I sent the letter to my representative!
done.
since they'll probably get lots about Tricia, i wrote about a friend of mine who was 19 when she got her transplant. they said she had about 5 more years... while friends were planning weddings, she planned her funeral. it was horrible.
another friend of mine is about 40 years old and has NEVER had a transplant. he wasn't diagnosed until he was almost in middle school, after his baby sister was diagnosed (their two siblings don't have it). my sister's a respiratory therapist & said she'd never seen that personally - hopefully it'll become the norm soon!
- michelle
Just sent mine to Representative John A. Boccieri (D-OH 16th)
Thanks for letting us all know:) Together we will all make CF stand for CURE FOUND!!
Nathan,
As soon as I finish this comment I am going to go to the site and join you in being a CF Advocate. I will share the impact Tricia's CF journey has had on me personally.
Thank You for the opportunity to pitch in and make a difference to a cause so near & dear to your heart...
Sincerely,
Patricia Nelson
Just had to comment one more time tonight to say....
I think Lil' Chris' Mom said something SO WAY COOL....
Her words, "TOGETHER WE ALL WILL MAKE CF STAND FOR CURE FOUND".
I will always remember her comment-knowing in the very near future, Lil' Chris' Mom words are going to be a fact.
I am praying for the day CF = CURE FOUND. What a celebration that day will be ! ! ! !
I was glad to send an e-mail. Easy to do. Thanks for letting me help!
I did it! I am glad to do anything I can to help. :)
Desiree
Done! Thanks for the link to help.
Done! Just finished sending the e-mail. Quick and easy
Just sent my email. Thanks for making it so easy to do.
I clicked the link and my email was sent to my representative from VT. Good luck and we'll all help you keep fighting!
I sent the email, Hope it passes, being a Cancer Survivor, I know the difference things like this make.
Nate, Thanks for giving us the link...I just sent it from Dallas...thanks again...here is what I told them:
I have learned a lot about CF because of Tricia Lawrenson. Her husband, Nathan, has a blog, "Confessions of a CF Husband" that has reached thousands....Their story is simply amazing. Tricia is a miracle. She became pregnant and had her miracle baby at only 24 weeks and her daughter, Gwyneth was only 1 lb...and was a miracle as well. Shortly after Gwyneth was born, Tricia received the double lung transplant she had been desperately praying for. Gwyneth has done so well and is now a thriving 16 month old. Tricia has been given a second chance at life. Nate, Tricia, and Gwyneth's faith and journey is simply amazing. I have been moved by their story. I am here to support CF so people like Tricia can continue to thrive and be here to watch her daughter continue to grow.
thanks again Nate for getting the word out...Hopefully things will improve...Hope ya'll have a great weekend!!!!
All done! Thank you for making this so easy.
I sent in my email! I can't imagine why anyone would NOT do this!! Praying for your family, others like you and for a CURE!
I sent it and emailes it to all my friends. I did this for my sweet nephew Thomas who has CF. I love you Thomas.
Just signed it, thanks for bringing that cause to our attention!
Was just curious, I know you mentioned that Gywneth was tested and doesn't currently have CF, but is she still a carrier from her mother, to pass it on to HER children one day? Please explain. Thanks
Hi Nathan, my name is holly and I am writing this all the way from Wichita, Kansas. When i came upon this blog, i read it EVERYDAY because of how touched i am by your story and you three as a family. I wanted to let you know that I did fill out the form to support your cause. Everyone deserves to see their children grow up and thrive. You are such an inspiration to so many people. You three are all awesome and so strong and i look up to all of you.
Done Nate.
A CFer I previous went to church with passed away this week. Drew was 26. Please, anyone who reads this, remember his family, and his wife, in your prayers.
I'm a mother of five, three of whom have CF. Our oldest son (who had CF) passed away, our two daughters with CF are 3 1/2 and 2 years old. I'm estatic to hear that a cure could be so close!!!! Both our girls are participants in every CF study they are offered. The CF Team of Doctors have been very good to us at the UNC Children's Hospital in Chapel Hill NC.
Thank you Nathan and Tricia for all the time and energy you put into keeping up this blog. It has become an incredible tool for the advancement of CF awareness.
I forgot to mention that I sent the email. And I'm going to be calling up all my family to get them to do it too. I will also be telling my husband, who is serving in Afghanistan, to send an email in from over there!
Thanks again, Susanna
Thanks for posting this! I sent my email out! Hope it makes a difference.
It was an honor to help find a cure for Cystic Fibrosis, even in this small way.
Thanks Nate for bringing this to my attention.
nice to be here. I always pray for you ang all cfers.
Just sent my letter to my congressman. My 19 yo nephew has CF so I am happy to be supportive of this cause.
Thanks for all you do bringing CF to the public.
Sarah
I sent the letter to Rep. Vern Ehlers and personalized it with parts of Tricia bio from her blog site.
Hi Nate, Thanks for the nudge. As a recent late DX CFer I hadn't hear before about this: "Right now, because of eligibility rules regarding compensation for clinical trial participation, many people with CF are forced to choose between taking part in important clinical trials and keeping their health care coverage." Can you elaborate some or give me some keywords I can google to get more info? I'm applying for some clinical trials and probably ought to read up on this fact! Thanks, ~Juliet
I just sent the email to my Congressman.
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