This video really shows the severity of the disease. It broke my heart to hear that girl talk about being near the end. I pray that there will be funding to help find a cure for this disease. Thank you for the continued education and awareness. Erinn
Just saw the post that Siobhan passed away. That just breaks my heart. She wanted to bad to have a "normal" life and be married, have children. So sad. Aspiemom
Thank you for this. Coming to know you and Tricia has changed my life outlook. I've made the decision to fight my own situation harder and more head on. Last year, I had pretty much just decided to quit searching for alternatives to the "inevitable" outcome I keep being told about with my disease. So, for that kick in the pants, I thank you!
Nate, thank you for sharing that. The video was very powerful. It really shows what life is like for us living with CF on so many levels. I don't think people really realize it and how many precious lives are being lost from CF. It is amazing how us CFers think alike and have the same fears and outlooks. It's just sad that there really isnt much we can do about it at this time, except spread awarness, pray and hope that a cure will be found sonner than later!! I will be sure to pass this video on!
Nate, I found that video yesterday and posted it on my facebook! I'm glad to see it's getting around. We're all praying for Tricia today, as she undergoes more chemo. Thank your being such willing servants of His!
I was really struck by the mention in the video that CF receives NO government aid because "only" 30,000 people in the US are effected. THAT SEEMS SO UNFAIR!
Thanks for sharing and continuing to educate us. I will certainly pass this along.
There have been so many times I have wanted to post a comment and never have. Instead I have just been a faithful reader for the past 6 months. My best friends cousin died this past week (24th) from CF. As soon as she mentioned CF I reallized how much knowledge I have learned and gained through your story. She asked me how I knew about Cf and I told her about Trish's story. I realized that I most likely would have never learned about CF if it was not for your family sharing your story. Then tonight I watched the video and saw Siobhan (my friends cousin) in the video and realized what a small world it is. For some reason I stumbled across your blog and am so happy I have been able to share in your journey! Thanks again
I thought that I recognized Siobhan from CF camp back in the early 90's. In reading another CF friends blog - I realized she was the same person. My other friend said that she had been listed for transplant and had been at the top of the list for the past 2 weeks. But, she had a lung bleed and ended up on a vent. The ravages of this disease know no bounds!
Amy Southern Ca www.caringbridge.org/visit/rosegirl
I cried as I watched this video. Thank you for making CF so much more real for those of us who don't have it as a part of our lives. This video really brought it home for me and inspired me to pray much more. We need God's help to find a cure for this disease!
I read your blog all the time (i.e. I check it at least once every day) but this is the first time I've commented. Your steadfast faith through all you've been through is encouraging and inspiring to me!
The more I'm exposed to CF through your blog and some others that I read now and then, I find that I’m getting a better grasp on what it is like to live with CF but at the same time I'm battling to wrap my mind around it. This video taught me more and made me realise how limiting this disease is, how important it is for the Government to realise that this is something that needs funding, and realising that this is the reason you put so much emphasis on donating money, and why people with CF grab hold of life so tightly.
The Cystic Fibrosis Foundation appreciates all of the viewers who have taken the time to watch this powerful video. We are especially grateful to a young woman, Siobhan Ryan, featured in this video who lost her battle with cystic fibrosis last week. While bravely fighting for her own life, she generously sought to spread awareness about CF and devoted precious time and energy to the film. It is because of people like Siobhan that the Cystic Fibrosis Foundation is working tirelessly to find new and better ways to control and ultimately cure this disease. To learn more about cystic fibrosis and how you can support our mission, please visit www.cff.org.
I found your blog through someone elses and it moved me to tears. My brother is 26 and has cystic fibrosis and i have watched him with his disease his whole life. You are amazing. I found you through one of my blog followers. I have quadruplets and have many blog friends. I will pray for you, your baby is beautiful. My kiddos were born 11 weeks early!!! I know how hard the NICU can be. gerwerbabies.blogspot.com
Wow, thanks for sharing this video, I'm going to post it on my blog with a link to you. Thanks for sharing your lives with us & using your story to #1 glorify God & #2 educate those of us who had no clue. You have given us all a gift - the question is what will we do with that gift?
Nate, Tricia & Gwyneth, Time to de-lurk. I've followed your journey from time-to-time because one of my friends links to your blog. I've come back to get updates and to know how to pray for you. Somehow you have captured my interest and I just appreciate your honesty, your grounding in Christ, your hope and such love for one other. I didn't really get it until I saw this video. And I will add to my prayers not only a cure for CF, but some big government funding for the 30,000 AMERICANS who have it. I'm astounded by that. Thank you for allowing so many (me) to learn and to start caring about CF through your blog.
so powerful. i immediately posted it on my facebook. even though i have never personally met anyone w/ CF, reading tricia's story has inspired me to do more to help find a cure.
It is rather telling that in our country we can fund health care for hundreds of thousands of non-Americans, yet shell out nothing for 30,000 citizens with a disease needing a cure.
Siobhan was one of my best friends. I wasn't there when she was near the end, and I just wanted to let you know that I will probably be visiting your blog often to see my friend. Siobhan was the most upbeat and caring person I have ever known. I'm glad she has the chance to live on and inspire other people the way she continues to inspire me.
You know I went to high school with Siobhan. We took trigonometry together and often hung out. I'm so sorry to hear of her passing. I am currently working on a research project for school and have decided to honor her memory by working on cf research this semester. I still have her senior prom picture in my album. What a wonderful lady with amazing spirit. It really broke my heart to see her crying in the face of this horrific disease. May her tenacity for living life to its fullest and her strength live on in all of us...
43 comments:
This video really shows the severity of the disease. It broke my heart to hear that girl talk about being near the end. I pray that there will be funding to help find a cure for this disease.
Thank you for the continued education and awareness.
Erinn
Wow...just WOW! It breaks my heart that so many amazing people have to go through that.
Wow.
Too much emotion for words.
Thanks for sharing and educating.
Thank you for sharing this video. My cousin lives in CA. When I sent her the link she said one name sounded familiar and sent me the following link.
http://www.legacy.com/FRESNOBEE/Obituaries.asp?Page=LifeStory&PersonID=112565526
Siobhan Ryan - the lady in the video talking about being near the end passed away on June 24.
that's a really great video. my heart just breaks listening to those people. you'll be in my prayers today tricia!!
Wow! THAT was powerful! Thanks for posting that.
For some reason I haven't been able to view your videos for a few weeks. It shows that the link is not there. Any idea?
Thanks,
Marla
marla@vermillionteam.com
Education in the form of video, such as this one, is very powerful. Thank you for continuing to educate us on this disease.
Shana from Greensboro
Such a touching video. Very sad to find out about Siobhan dying.
Thank you for posting this.
Wow, what a powerful video! I don't know who "owns" the video, but they should put it on cf.com's CFTube.
I'm so blessed that I've lived 48 years with this disease!
Thanks, Nate!
Aspiemom
Just saw the post that Siobhan passed away. That just breaks my heart. She wanted to bad to have a "normal" life and be married, have children. So sad.
Aspiemom
Wow, powerful is right. Heart breaking to hear that Siobhan died. I hadn't realized the statitics.
Thank you so much for sharing this...I linked here from my blog so others could see the video.
Thank you for posting this video. It's made me stop and think.
Thank you for this. Coming to know you and Tricia has changed my life outlook. I've made the decision to fight my own situation harder and more head on. Last year, I had pretty much just decided to quit searching for alternatives to the "inevitable" outcome I keep being told about with my disease. So, for that kick in the pants, I thank you!
Nate, thank you for sharing that. The video was very powerful. It really shows what life is like for us living with CF on so many levels. I don't think people really realize it and how many precious lives are being lost from CF. It is amazing how us CFers think alike and have the same fears and outlooks. It's just sad that there really isnt much we can do about it at this time, except spread awarness, pray and hope that a cure will be found sonner than later!! I will be sure to pass this video on!
Thank you again and God Bless!
-Angela
Nate,
I found that video yesterday and posted it on my facebook! I'm glad to see it's getting around. We're all praying for Tricia today, as she undergoes more chemo. Thank your being such willing servants of His!
Wow, heartbreaking video.
I was really struck by the mention in the video that CF receives NO government aid because "only" 30,000 people in the US are effected. THAT SEEMS SO UNFAIR!
Thanks for sharing and continuing to educate us. I will certainly pass this along.
Wow. What an amazing video. Thanks for sharing it.
What an amazing video. Thank you for sharing this video.
Wow! It brought me to tears. Very moving, thanks Nate!
Amazing.
Heartbreaking.
Eye-opening.
Thanks~
Thank you. Off to donate now...
That's pretty powerful stuff. My thoughts and prayers are with Tricia today during her chemo treatment!
There have been so many times I have wanted to post a comment and never have. Instead I have just been a faithful reader for the past 6 months. My best friends cousin died this past week (24th) from CF. As soon as she mentioned CF I reallized how much knowledge I have learned and gained through your story. She asked me how I knew about Cf and I told her about Trish's story. I realized that I most likely would have never learned about CF if it was not for your family sharing your story. Then tonight I watched the video and saw Siobhan (my friends cousin) in the video and realized what a small world it is. For some reason I stumbled across your blog and am so happy I have been able to share in your journey! Thanks again
Awesome video. We'll pray about what we can do for the Great Strides. Hope the chemo went well. We are praying.
I thought that I recognized Siobhan from CF camp back in the early 90's. In reading another CF friends blog - I realized she was the same person. My other friend said that she had been listed for transplant and had been at the top of the list for the past 2 weeks. But, she had a lung bleed and ended up on a vent. The ravages of this disease know no bounds!
Amy
Southern Ca
www.caringbridge.org/visit/rosegirl
Thanks as always for such a moving video. I will link to it and share. As always, praying for a cure.
I cried as I watched this video. Thank you for making CF so much more real for those of us who don't have it as a part of our lives. This video really brought it home for me and inspired me to pray much more. We need God's help to find a cure for this disease!
I read your blog all the time (i.e. I check it at least once every day) but this is the first time I've commented. Your steadfast faith through all you've been through is encouraging and inspiring to me!
Thanks for the video Nate, really puts things into perspective.
jeanette
The more I'm exposed to CF through your blog and some others that I read now and then, I find that I’m getting a better grasp on what it is like to live with CF but at the same time I'm battling to wrap my mind around it. This video taught me more and made me realise how limiting this disease is, how important it is for the Government to realise that this is something that needs funding, and realising that this is the reason you put so much emphasis on donating money, and why people with CF grab hold of life so tightly.
thanks for the perspective...
The Cystic Fibrosis Foundation appreciates all of the viewers who have taken the time to watch this powerful video. We are especially grateful to a young woman, Siobhan Ryan, featured in this video who lost her battle with cystic fibrosis last week. While bravely fighting for her own life, she generously sought to spread awareness about CF and devoted precious time and energy to the film. It is because of people like Siobhan that the Cystic Fibrosis Foundation is working tirelessly to find new and better ways to control and ultimately cure this disease. To learn more about cystic fibrosis and how you can support our mission, please visit www.cff.org.
I found your blog through someone elses and it moved me to tears. My brother is 26 and has cystic fibrosis and i have watched him with his disease his whole life. You are amazing. I found you through one of my blog followers. I have quadruplets and have many blog friends. I will pray for you, your baby is beautiful. My kiddos were born 11 weeks early!!! I know how hard the NICU can be.
gerwerbabies.blogspot.com
Wow, thanks for sharing this video, I'm going to post it on my blog with a link to you.
Thanks for sharing your lives with us & using your story to #1 glorify God & #2 educate those of us who had no clue.
You have given us all a gift - the question is what will we do with that gift?
God bless, the pictures have been great!!
Nate, Tricia & Gwyneth,
Time to de-lurk. I've followed your journey from time-to-time because one of my friends links to your blog. I've come back to get updates and to know how to pray for you. Somehow you have captured my interest and I just appreciate your honesty, your grounding in Christ, your hope and such love for one other.
I didn't really get it until I saw this video. And I will add to my prayers not only a cure for CF, but some big government funding for the 30,000 AMERICANS who have it. I'm astounded by that. Thank you for allowing so many (me) to learn and to start caring about CF through your blog.
so powerful. i immediately posted it on my facebook. even though i have never personally met anyone w/ CF, reading tricia's story has inspired me to do more to help find a cure.
It is rather telling that in our country we can fund health care for hundreds of thousands of non-Americans, yet shell out nothing for 30,000 citizens with a disease needing a cure.
Siobhan was one of my best friends. I wasn't there when she was near the end, and I just wanted to let you know that I will probably be visiting your blog often to see my friend. Siobhan was the most upbeat and caring person I have ever known. I'm glad she has the chance to live on and inspire other people the way she continues to inspire me.
That was tough to watch..thank you for posting it..My condolences to Siobhan Ryan's family..i will post a link..God Bless
You know I went to high school with Siobhan. We took trigonometry together and often hung out. I'm so sorry to hear of her passing. I am currently working on a research project for school and have decided to honor her memory by working on cf research this semester. I still have her senior prom picture in my album. What a wonderful lady with amazing spirit. It really broke my heart to see her crying in the face of this horrific disease. May her tenacity for living life to its fullest and her strength live on in all of us...
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