Friday, July 18, 2008
Clinical Trials
Tricia has participated in dozens of trials and studies, and will continue to do so for as long as possible. Read more about that Here. If you are a CFer, one of the biggest reasons you have the drugs and technology at your disposal to help you deal with your CF is because other CFers were willing to participate in clinical trials and studies. Please, consider the possibility.
Read More about the work that Boomer Esaison is doing to find a cure for CF!
Thanks.
Nate
12 comments:
We just started our 5-year-old in the 2nd Phase 3 clinical trial for Denufosol. So far it is a little more work than we anticipated but we'll get it figured out. I keep trying to think of the big, long-term picture. It is helpful to read of Tricia's and other's experiences because it is motiviation; as a plain-old parent and not a molecular biologist/chemist there are only so many things we can do, but this is certainly one of them.
Re: Gentle Reminder
I was going to suggest blocking 'anonymous' bloggers, but it looks like that feature has been put in place. That will definitely cut down on the crude/rude comments. People can be so unfiltered and raw (and out of control) when they're anonymous. Also, I now moderate comments by not allowing them to be posted until they've been approved. You may have already considered that feature but in case you hadn't, I definitely recommend it. I get an e-mail with the comment and decide if it gets published or rejected.
I continue to check in and keep you and the beautiful women in your life in my prayers.
Blessings,
Marcie
When I was younger, I was a HUGE Bengals fan, and Boomer Esiason was my favorite. Had a big ol' poster of him over my bed. :)
I remember hearing about Gunner being diagnosed with CF. Cutest little thing!
Kudos to Tricia for all she does for others!
I've been tracking your journey since early 2008, specifically because our extended family has been touched by CF. I've also cried my share of tears with your family. I want you to know that even though I have never commented before, we are faithfully praying for your family unit and all those who love and support you on the front line.
You three are always an inspiration to me, especially because you live out the HOPE that is found in the Giver of all hope! Thanks so much for being real and for living out your faith for His purposes. May our Savior be glorified!
Because He Lives and for His Glory,
Heather Marie
You know I am really amazed at how cruel some people can be sometimes. I just finished catching up on all the info that I have missed the last couple of days. I didn't think I could get that far behind since Wednesday. I was really moved by your discussion of your feelings after Gwyneth was first born. It is so true that you really can't understand the emotions until you have gone through it yourself. I remember my family trying to console me after my miscarriage a few years back and I know intentions were meant well but they just really didn't understand except my one aunt who had actually been through it herself. I know at this time I don't understand the feelings of having a premie especially as early as Gwyneth was. On another note seeing the newest pic posted of Gwyneth makes me miss that old geezer look that my boys had at that age. Praying for you daily.
hi..Im new to ur blog..came across it today.. what a beauiful family u have..mashallah..I luv ur pics..
Inshallah ur wife will be alrite soon!
take care
P.S: Kisses 4 ur baby gal
Hello Nate,
I just spent a week in the Outer Banks. We rent a house right behind Logan's Ice Cream store. I saw your church!!!! My internet did not work the entire time there but I thought of you every time we passed Mama Kwan's.
I am just amazed at how Gywneth looks so adorable and healthy now. Her facial expressions are so cute. Thanks for keeping us all updated about Tricia and Gwyneth. Oh do you ever call her Gwynnie? I love that nickname.
If mean people post here, can't you just ban them. I had to register to be able to post.
Cheryl from Fairfax
PS. When I couldn't get on your blog for the whole week I was in the Outer Banks, I was seriously getting withdrawal pains - just dying to know how you all were. Still praying!!!
Asthma is nothing like CF however that is what my son and I have we both participate in trials when possible. The care under the trial doctors is great. I would encourage anyone with a cronic illness, especially something like CF, to help in this way when they are able. It may help that individual or many that come after.
I am for clincical trials for any illness.My brother works at the National Institutes of Health doing research on drugs which of course includes the clincial trials.
We're all about participating in clicial trials...knowing that this is how cures are found. Way to go Tricia!
Tricia, Thank you for your selfless help, so kiddos like my Froggy can live to 100.
I have to admit a little frustration with the CF Foundation and the scientific community at large.
Ever since I was first diagnosed at age 4 in 1975 they have been telling me a cure was just around the corner.
In 1989, they discovered the CF gene and hinted that a cure was imminent.
And what's happened since then?
Nothing. Unless you count improved experience with transplantation--which is certainly no cure.
We've been giving to the foundation for so long. My dad's memorial was given to the foundation.
Now my docs tell me that any cures or even better treatments that come about will really have no benefit for me as my lungs are too far damaged.
I've been waiting for a transplant for a year now and my dyspnea is so bad that I get winded just brushing my teeth on 4 liters of oxygen.
And now my insurance says it will not pay for my transplant (after approving me over a year ago).
Well, that's just my vent. I know others (including you, Tricia, and Gwynneth) have it far worse than me. And I'm really a genuinely happy person for the most part.
But my happiness stems not from my level of health or any potential medical breakthroughs...but rather my trust in God's sovereignty. His love and His compassion will be enough for me and my family.
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