So happy about this movie! Finally we are getting some awareness! And not to mention a pretty great cast put together! Can't wait! I also have CF and just recently celebrated my 18th birthday!! Yay for making it to adulthood!
@elicaroliv@stoozor, you're both right! Will's journey is about learning to live to the fullest! Some of us take that simple notion for granted, we all need reminders. :)
<----- My two wonderful children who happen to have cystic fibrosis. Can't wait for this film to come to the States! Wonderful trailer preview to what will be an incredible full length feature. Best Wishes!
My boyfriend has cystic fibrosis and we are both so thrilled that such an inspiring film was created. Not only is it inspiring but it raises awareness as well.
I am 34 with CF..And I can't wait to watch this. I am very happy and live life as it comes every day. I am happily married and the proud mother of a 10 yr old healthy daughter. I wouldn't change my life for anything! :)
WHY IS EVERYONE WITH CF DEPICTED AS DEPRESSED?! I have CF and I am happy to be alive! I thank God for every breath and if I were to die, it was a blessing to be alive! Please congratulate life with me and do not be depressed, cheer with those with this disease and encourage! No need to be sad all the time! I will go see this movie and I hope it's happier than the trailer makes it out to be!!
@Stoozor I don't feel the need to have to bribe people in order to get donations.. in that case, i might as well just make myself malnourished so people can give me money.. pretty pathetic.. i think just showing people everything we have to do each day will be enough!
@elicaroliv Still, my point stands. There are people with CF who are depressed and angry. It just makes sense to choose to depict that reality rather than the reality of those who live super happily with it.
@Stoozor Well I understand that some people feel this way with CF.. I just find this trailer extremely depressing.. It's good that this disease is getting out there so people are aware of it, but I just don't agree with how it is portrayed because it is not encouraging me as a CFer and this disease is certainly not going to rule my life. I choose to be happy regardless of this disease.. there's a more important thing to focus on.. =)
I am totally going to watch this. :)I am 13 year old girl and I was diagnosed with this terrible disease CF at five months. I am doing well very well my doctors say. My lung functions are actually going up as i`m getting older. I am also doing well in school and I play lacrosse. I have recently been diagnosed though with CF related diabetes which is another speed-bump in my life. I really really want to watch this it made me cry so much because i have a hard time watching things about cf.
Maxwell, I just saw a short interview with you and have worked out your inspiration. Thank you my fellow CFer. You've done a brilliant job with this film. I loved what you said about bringing hope and encouraging people to "enjoy the day"...
Thank you so much for making this film. I'm 49 and have CF. Not only is this a film about living with CF, it looks like a very good hip indie film (very pumped about that). I don't know if the film-makers read these posts but if you do, I'd love to know what / who was your inspiration. I'd be very grateful for any behind the scenes information. Cheers and thaks again. Mark
Wow, I really hope this gets realeased worldwide...it will actually educated people about CF. because everything is amount how much money goes to cancer these days and frankly I'm sick of it. People with CF need just as much funding. With cancer, you live or die. CF is lifelong. I have CF myself. xx
I'm 28 with CF. I have no intentions of giving up. CF isn't a death sentence. It's just a challenge that will be beat. Stay on top of your treatments, medicines, rest, and exercise.
@JRhea777 Especially exercise :) not enough emphasis is placed on that one on cfers, in my opinion. My doctors estimate between 3-4% lung function per year can be saved via regular exercise.
@sexysquirrel1214 Did Michael get his lung transplant in NJ in Newark/Livingston Hospital? Just wondering only because my niece had a transplant there and there was another patient there named Michael..
Hope he is doing well. God Bless you both...
I cant wait to see this movie.... We have been living with CF in our family with 2 sisters for over 22 years now and I just wish there was a cure for CF......
@maximusfilms I agree. But what you've done and what you're doing is wonderful. Raising awareness, educating people about this disease is fantastic. We as CFers can only go so far into explaining it to people who have no idea what it is. You're putting our words into pictures. Im stoked to see the movie once it hits. You, my friend have many years left like the rest of us. Keep it up.
@Ikarimalice Thank you. I dont know what your problem is, this strong need to be right. I have told you my doctors have told me I'm not terminal. Why cant you accept that? What gain do you get typing to teenage girls over the internet telling them they're going to die? Why cant you just leave me be? You had me in tears last night. I firmly believe I am going to live to 80 whether it be from a cure or lung transplant. So I'll keep opstimistic and you keep putting people down if it makes you happy
Right, I have Cystic Fibrosis and basically within 24 seconds I was pissed off. The moment it is declared that the main character has been preparing to die his whole life, my jay dropped. That's bullshit! I'm 23 and plan on outliving everyone! My main concern is kids with CF watching this. The trailer implies that this is an inspirational tale. Which is basically him going abroad, because apparently that would be hard for us? And don't get me started on the bit WHERE HE'S TRYING OUT COFFINS.
@jagetherage Plan all you want. It doesnt change reality. I am 28 with CF. My health now has dropped significantly since when I was 23..prepare yourself. Find optimism amongst the reality of your health inevitably declining. Don't try to seek it out by blinding yourself.
@Ikarimalice So being optimistic is blinding yourself from the truth now? Jesus H Christ. I'm not saying people don't die, I've lost a friend to CF when she was just 16. My problem with this trailer this is the idea that we spend our whole lives counting down the days. People with CF are known for their positive outlook, because that's the best way to deal with things. Am I going to get worse? Probably. But I'm not gonna dwell on it.
@jagetherage Of course not. I said claiming it isn't terminal is blinding yourself from the truth. Denying reality while saying it's cynical or pessimistic is blinding yourself. People with CF need to be more angry and frustrated and less happy fluffy sugarcoated. Most people out there don't know what CF is, so our hope and research is delayed because instead of trying to raise awareness for just how bad CF can be, we're trying to say "it's okay..I'm not terminal!" when you are.
@jagetherage I`m 13 with CF and I kind of agree. But I honestly worry about my disease and care about it but I also actually care about just living my life and not letting CF get in my way and ruin my life. And watching things like this makes me sad and mad.
@iamgreengirl123 I understand things are hard but you shouldn't worry. All you should do is try and live life to its fullest.The fact that this video upset you is the reason this trailer pissed me off so much. They had the chance to be inspirational and motivating but instead its just morbid. Just ignore it though. What do they know? All you should focus on is trying to be the best Gwen you can be.
@Valerieannmorrell you're right, that is upsetting...but, they may have cut out the rest of the description. you know how they do. (:
and to everybody else...why the heck does it matter whether we say "terminal" or "life threatening"? hell, LIFE is terminal!! no matter whether you're sick or healthy! the fact is that this disease KILLS. all too many at a much, much too young age. so instead of arguin bout the terminology why don't you spread the word and awareness?!?! that would help CURE CF!!!
...which leads to the malnutrition and the need to take digestive enzymes. Furthermore, this thick mucus is hard to clear out of the lungs and often becomes colonized with bacteria leading to respiratory infections. Lung infections are the real issue with CF.
The description of the science of CF is incorrect.
He says "my body lacks the proper digestive enzymes to keep my pancreas clear of cysts." This is simply not true. In CF an ion channel found throughout the smooth tissue of the body (known as the CFTR) is defective and this prevents the flow of sodium, potassium and chloride. This leads to thicker than normal mucus. This thicker mucus plugs the pancreas preventing the pancreatic digestive enzymes from being secreted into the GI tract.......
@Ikarimalice How dare you. ''Perhaps you'd like to tell their parents it's a life threatening disease and not terminal''. Thats a horrible thing to say to me!! Of course I know you can get to a point where it's terminal. I also have lost friends. What I'm saying is it's not terminal from birth!! My brothers lung function is in the 90s and whoever can say he is ''Terminal'' is an idiot. It's life threatening your whole life and not terminal until the doctors say theres nothing left they can do.
@DustBunnie92 I don't think anyone was trying to be offensive. "Terminal" is a clinical descriptor of a disease, as well as describing the patient. In this case, it's correct to say that CF is a terminal illness, as it will eventually kill us. It's not correct to say that a patient is terminal until, as you say, end stage. We all need to be careful about using that word and making sure we use it correctly, even if we don't like the connotations it carries. Oh, and...39, male, double ΔF508.
@DustBunnie92 Terminal means terminal. The word terminal is not indicative of a time frame. Yes you are terminal at birth. (Please spare me the "we all are!" excuse). It's actually the opposite of what you're saying. It's terminal your entire life, but it becomes life threatening when your body is too damaged and scarred to recover from whatever is going on. The life threatening infection is the result of the terminal disease..get it?
@Ikarimalice Dont get cocky with me and be so insensitive about it!! ''Get it?'' < dont talk to me as if I'm stupid either. Doctors tell people different things. As I have said in an earlier comment. I have 60 year olds in my clinic and my friend has a new patient in her clinic who has just been diagnosed at 75 and refuses to do treament. If your doctor has told you youre terminal and you believe what he says thats fine. My doctor says it's life threatening and that I'm definatley not terminal.
@DustBunnie92 It isn't cocky, it's educated. Yes there are varying degrees of severity. Put it this way..if you're a very mild case at 23 where you do not need antibiotics and your lung function is still roughly 100%..you're in great shape. If you require IV treatments that means your bacteria are already advancing and evolving and inevitably will resist antibiotics. Hope lies in new treatments, but there's a difference between a 60 y/o with a very mild case and a 23 year old who needs IVs
@Ikarimalice So youre saying Im not educated. Do you have a Doctors degree or a degree in google? As I said before, my doctor says I'm not terminal. I'm 19, 40% lung function and on Iv's 4 times a year. You can listen to your doctor and I can listen to mine. My friends lung function is 21% for 9 years and he has a full time job. I have enough to deal with and enough stress and dont need you telling me I'm going to die on top of everything when you dont know a thing about each individuals case.
@DustBunnie92 I have CF. I know what CF is. It's a terminal disease. This is not up for debate. You can argue semantics all you wish, but it does not change facts. What your doctor is telling you is *you* are not terminal right now, but your *disease* is. Also, politely as possible, there's no way your friend dropped to 21% and remained there for nine years.
@Ikarimalice Also, its the complete truth about my friend. So you're abviously not as educated as you think. I'm not going to reply again and I'd appreciate it if you didnt either as I am sick of these comments making me so angry. Go by what your doctor tells you. If someone elses doctor tells them different ACCEPT IT. You dont know what they meant behind their words either. So stop telling everyone theyre wrong and that theyre going to die.
@DustBunnie92 I know what CF is, it's as simple as that. As for your friend..claiming that is like trying to tell an auto mechanic "yeah my transmission died but I've been driving my car fine for 9 years now despite it". I've known several people who have died with more lung function than 21%. You do not get that low and live fine for 9 years. I believe your friend probably works and is still alive, but if he/she is at 21% now, they certainly weren't 9 years ago.
@Ikarimalice ''People with CF need to be more angry and frustrated and less happy fluffy sugarcoated.''. Thats made me feel so much better. I now know you're only here to bring misery to everyone because you're very unhappy with your own life. It's like all my friends told me last night that you were calling me terminal because you are very unhapy with your own life and take it out on others. As for my friend - believe what you want, he has his tests results posted since 2001.
@DustBunnie92 No, I'm here to hope for proper awareness. I've lost a dozen friends in my life with CF already, two of which were exceptionally close to me, so please tell me if CF isn't terminal then how did that happen? If it isn't terminal, why would you need a lung transplant? Where are his test results posted? I'd love to see them. I'd love to know how opportunistic bacteria can infect and scar lungs to 21% and then just decide to stop for 9 years when most would be near death by then.
@Ikarimalice Iv'e lost people from cancer. Just because they've died it doesent mean everyone who gets cancer is going to die. Also, I swear on my families life I was in college full time 2 years ago with 22% lung function and was never offered lung transplant. I have been 25% to 35% up and down for 2 years and am doing fine and have NEVER been offered a lung transplant. 2 weeks ago I got the news I am back up to 40%. I'm not going to give you a link so you can spread misery to him aswell.
@DustBunnie92 Cancer is not CF. I'm not spreading misery, either. In none of what I said am I saying you're dying, or you will die shortly. I'm saying it's unrealistic to say it isn't terminal, and to look at the facts. Needing lung transplants at all, needing IVs four times a year to nuke the bacteria in your body, needing routine hospital appointments and dropping to 20-40% function, etc. It's all indicative of a terminal illness. That's simply it.
@DustBunnie92 And you generally wouldn't be offered a transplant list until you're at 20% consistently. Infections can knock you down from 40ish % to 20% but only after a period of time(anywhere between a couple weeks to perhaps a couple months) of strenuous IV antibiotics with no signs of improvement(suggesting bacteria is now significantly resistant and unable to be treated) will they say a transplant is needed to save your life.
@Ikarimalice ''I am telling you you are going to die of CF eventually'' so yeah you told me I'm going to die. Just carry on with your morbid life, I cba writing anymore. I have better things to do with my time.
@DustBunnie92 Eventually CF kills you, yes. Not right now. The "when" is the frustrating. part. You may live until you're 35. You may also get resistant just a couple years from now. Morbid? Like I said..perhaps it's just the feeling that the refusal to look at it in that light(or dark, if you will) is what keeps CF research at a snail's pace no matter how many people die. How many CF deaths have to occur in people with "optimistic" mentalities before they admit the dark side to CF is there.
No a lot of my fiends are on transplant at 30%. thats probably the base line here in britain but since I could hold full time at college they said my body is strong enough to cope. I havent been 40% in about 2 years so it's pretty big for me. I have been consistently 28% (34% at the highest which was usually a one-off) for 2 years. I've raised a lot of money for CF by spreading awareness so I'll keep doing what I'm doing in a nice way with inspirational ppl and you carry on having a morbid life.
@DustBunnie92 Sorry for the confusion, I meant 20% consistently for you in that example. You may call it morbid, that's fine, I call it realistic. Though honestly, I had to have surgery to stop my lungs from bleeding in one particular location, and there's nothing not morbid about coughing up a half liter of blood, let me tell you. So if I'm morbid, perhaps it's because my individual case of CF has been.
@Ikarimalice I have a port, G-tube, and I'm living off my right lung as my right one has died. Also had times where I've coughed up tons of blood. I'm not making it a contest just saying it hasnt been easy for me either. I'ts probably just my positive attitude then and lets me live my life to the full happily. Anyway I'm off out. Try to have a happy life without bringing others down is all I can say.
@DustBunnie92 And I think people need to be more angry and frustrated because CF lacks awareness and funding for faster research and development. Why would people want to donate money to our cause when people like you sit back and say "it's okay, I'm not terminal" when you are? It's sad, truly sad that the mentality of people in your life is to insist it's my life I'm unhappy with because I no longer believe in blind optimism in the face of a progressive disease.
@DustBunnie92 This is all moot, though. Next appointment you have, ask your doctors the right questions. "When does CF turn terminal then?" And "at what rate do the bacteria build resistances?". They won't have specific answers, but the answers they give will show you what lies in the future of anyone with CF, and that future is the reason for frustration and the NEED for PROPER awareness.
@DustBunnie92 Also, that is the whole point. I am not telling you you are going to die right now. I am telling you you are going to die of CF eventually, if it wasn't terminal then you wouldn't be 19 with a 40% function. You'd be 19 with a 100% function because no disease would be progressing through your lungs, scarring them irrevocably. I wish you luck and truly hope it stabilizes as long as possible, because having CF I do know how much it sucks, but reality is reality and it's terminal.
CF is not a terminal illness for all that have it! there are a lot of people that have CF but they have not serious health problems. anyway, many ways have been found to treat this and i think that future will bring to us the best solution to cure this! and don't forget, a gene therapy has been developed for CF (but it is not used widely due to problems with the viruses that carry the "right" gene to the lungs of the person that has CF)
@giko7 Giko, it is terminal. By "not all" you're talking 1 out of 1,000 will have a mild enough case to not be too bothered. The rest die young. I myself am 28, and am in average health, but the real test if you make it this far is what happens after 30 when your body begins to age. The rest I've known with CF have mostly all died between 15 and 25. As far as gene therapy is concerned, there is no treatment. The issue with the viruses isn't about carrying the right gene, it's that the only
@Ikarimalice ok, really? wow i'm really sorry if i insulted you then :( it's just that the few people i know that have CF, are not in a serious condition and i don't know what's the real deal with this. sorry
@giko7 viruses capable of penetrating the immune system enough to deliver the new genes are too strong to just inject into the body without mass research to break down the proteins to utilize their bypass capabilities without the virus(IE ebola was one of the ones talked about). The other issue is gene therapy may replace 60 billion or someodd genes in the lungs, but your immune system will eat them eventually. Sooner rather than later. A better hope is in stem cells.
@Ikarimalice wow ok, it seems that what we learn at school it's far, far away from reality!!! i'm neither a doctor to know all this, nor sb that has done a very good research on CF. I just know some things from school... and i'm like :O now that i realize there are a lot of problems with these methods. what about stem cells? i'm going to search for this, thanks :)
@giko7 Essentially stem cells have shown that if you take an organ and chemically strip them of their donor cells, you can use stem cells to make those organs to adapt to your cells as opposed to the donor's(which would no longer exist) and subsequently ridding organ rejection in transplant and "curing" CF. I quote it because the liver would still be affected as would the stomach and pancreas, but the most fatal part of it would be fixed. google stem cell organ transplant for info :)
@DustBunnie92 Having grown up with it myself, I know many can live a long and relatively uninhibited life - having been said, to the best of my knowledge, and experience, there is no cure and all who have CF will eventually succumb to some part of it's effects?
Which is why we need to keep raising awareness and supporting research!
@maximusfilms There is also no cure for Diabetes or Athsma. You can die from them but they're not terminal. I just get really annoyed at the word ''Terminal'' as if were all doomed to die from birth when we most certainly are not. If I thought my illness was terminal I wouldnt bother living my life. Sorry the word just offends me so much!
@DustBunnie92 Terminology aside, that exact sentiment "..If I thought my illness was terminal I wouldnt bother living my life..." is what inspired the film.
To me, the knowledge of the impending threat is what inspires CF'rs to live life to the fullest, and inhale every breath in this world!
@DustBunnie92 It's terminal. I have it, and I have already lost a dozen friends to it all before the age of 25. Perhaps you'd like to tell their parents "it's life threatening, not terminal". You have CF..you'll die of it. There's a very, very select rare few(I'd say under 1%) that have mild enough cases to live 'normal' time spans.
@Ikarimalice I have had similar experiences to you, but let's try to remember people experience and cope with their illness in different ways.
I'm happy to be a part in raising awareness of CF - surely there's going to be people that love how I did so, and others that don't like the way I did.
@maximusfilms Oh absolutely. Awareness is fantastic and I certainly have no issue with the film itself as far as I can see :) It was painful to watch the trailer, but in my mind that is certainly a good thing. I'm glad you're making a film on it. I always wanted to, and even took on a film internship a few years ago, but that was when my health got worse and Iw as forced to drop it..lost most of my motivation after that.
i have CF, so I can't wait to see how different this will be from my life! :) I just saw 65_RedRoses the other night, and I cried a lot, because one of my really good friends with CF also got a lung transplant like the girl in the film did, but he didn't make it :( I miss him a lot, snd I'm hoping this movie will raise awareness of what me and people like me are going through.
@whamcf Everything except he seems like he's in ok health for most of the film then takes a sharp sudden turn for the worse..generally that doesn't happen if you're still capable of walking around and going on a trip without oxygen. That's where "it's a movie" comes into play, and I'm glad..I hope more people see how rough CF gets.
So happy about this movie! Finally we are getting some awareness! And not to mention a pretty great cast put together! Can't wait! I also have CF and just recently celebrated my 18th birthday!! Yay for making it to adulthood!
ashleythinksyourock 3 weeks ago
Man I thought love and other drugs was bad enough
TheHaiiiJuan 3 weeks ago
wow, I wanna watch that movie soon!!!!
gusyMarta 3 weeks ago
i've watched this trailer so many times i can recite the whole thing. i seriously need to see this movie. for my sanity, if anything.
meganalice07 1 month ago 2
Sarah <3
Stepofromserbia 1 month ago
когда фильм будет на русском?
Vikaisaeva007 1 month ago
@Vikaisaeva007 Как только я знаю, я отправлю это! Best regards, Max
maximusfilms 1 month ago
@elicaroliv @stoozor, you're both right! Will's journey is about learning to live to the fullest! Some of us take that simple notion for granted, we all need reminders. :)
maximusfilms 2 months ago
<----- My two wonderful children who happen to have cystic fibrosis. Can't wait for this film to come to the States! Wonderful trailer preview to what will be an incredible full length feature. Best Wishes!
lyourman 2 months ago
My boyfriend has cystic fibrosis and we are both so thrilled that such an inspiring film was created. Not only is it inspiring but it raises awareness as well.
WhoAreWe15 2 months ago
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I am 34 with CF..And I can't wait to watch this. I am very happy and live life as it comes every day. I am happily married and the proud mother of a 10 yr old healthy daughter. I wouldn't change my life for anything! :)
traceylabelle 2 months ago
Comment removed
traceylabelle 2 months ago
English:
when i can download this movie ?
Polski:
gdzie mogę ściągnąć ten film ?
prydzio1 2 months ago
Hey can someone write subtitles in English, although that later translate into Polish?
Hej może ktoś napisze napisy chociaż po angielsku aby przetłumaczyć pozniej na polski ?
uplaudek 2 months ago
WHY IS EVERYONE WITH CF DEPICTED AS DEPRESSED?! I have CF and I am happy to be alive! I thank God for every breath and if I were to die, it was a blessing to be alive! Please congratulate life with me and do not be depressed, cheer with those with this disease and encourage! No need to be sad all the time! I will go see this movie and I hope it's happier than the trailer makes it out to be!!
elicaroliv 3 months ago
@elicaroliv yeah, because showing people with CF as happy is going to make them want to donate.
Stoozor 2 months ago
@Stoozor I don't feel the need to have to bribe people in order to get donations.. in that case, i might as well just make myself malnourished so people can give me money.. pretty pathetic.. i think just showing people everything we have to do each day will be enough!
elicaroliv 2 months ago
@elicaroliv Still, my point stands. There are people with CF who are depressed and angry. It just makes sense to choose to depict that reality rather than the reality of those who live super happily with it.
Stoozor 2 months ago
@elicaroliv Because they're the ones who suffer the most.
Stoozor 2 months ago
@Stoozor Well I understand that some people feel this way with CF.. I just find this trailer extremely depressing.. It's good that this disease is getting out there so people are aware of it, but I just don't agree with how it is portrayed because it is not encouraging me as a CFer and this disease is certainly not going to rule my life. I choose to be happy regardless of this disease.. there's a more important thing to focus on.. =)
elicaroliv 2 months ago
@elicaroliv yeah sure
7hom 2 months ago
I am totally going to watch this. :)I am 13 year old girl and I was diagnosed with this terrible disease CF at five months. I am doing well very well my doctors say. My lung functions are actually going up as i`m getting older. I am also doing well in school and I play lacrosse. I have recently been diagnosed though with CF related diabetes which is another speed-bump in my life. I really really want to watch this it made me cry so much because i have a hard time watching things about cf.
~Gwen
iamgreengirl123 4 months ago
Is it true? and when is it being realesed? I soo hve to see it I have CF <3
Tigergir7 5 months ago
@Tigergir7 Definitely true, release isn't set yet. When it is, it will be announced for the whole community to know! Hope you're well!
maximusfilms 5 months ago
Maxwell, I just saw a short interview with you and have worked out your inspiration. Thank you my fellow CFer. You've done a brilliant job with this film. I loved what you said about bringing hope and encouraging people to "enjoy the day"...
1Breath1Step1Day 5 months ago
100000000000000000000000000% Amazing
08MyWorlds19 5 months ago
Thank you so much for making this film. I'm 49 and have CF. Not only is this a film about living with CF, it looks like a very good hip indie film (very pumped about that). I don't know if the film-makers read these posts but if you do, I'd love to know what / who was your inspiration. I'd be very grateful for any behind the scenes information. Cheers and thaks again. Mark
1Breath1Step1Day 5 months ago 2
@1Breath1Step1Day Many inspirations, friends, family and my own journey with the illness!
maximusfilms 5 months ago
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I really want to see this movie. I hope it is shown in Australia. Yes life is too short.
Phatcow01 5 months ago
oh my gosh.... I REALLY hope this makes it worldwide... so badly!!!!!!! Eva would have LOVED this movie!!!!!! 65redroses . com Eva forever!
I can't wait to see this.
GalaxyofStarrs 5 months ago
Wow, I really hope this gets realeased worldwide...it will actually educated people about CF. because everything is amount how much money goes to cancer these days and frankly I'm sick of it. People with CF need just as much funding. With cancer, you live or die. CF is lifelong. I have CF myself. xx
evilbubble 5 months ago 15
Baja!!!! I live there...!!
rania8778 6 months ago
@rania8778 Me too!!! :D
EGR1600 5 months ago
a cure signifies theres something wrong with you. I have a brain tumor. I will never be cured. There is nothing wrong with me
changingtheworldat17 7 months ago
Finally! A movie about CF.
Blahkishma 7 months ago
Okay so I cried.... I love Max.
wowitsarainbow 7 months ago
1 Person doesnt believe in "the cure"
kalava182 7 months ago
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this beautiful baja sur! good locations!
poletlove 7 months ago
this beautiful baja sur! good locations!
poletlove 7 months ago
I'm 28 with CF. I have no intentions of giving up. CF isn't a death sentence. It's just a challenge that will be beat. Stay on top of your treatments, medicines, rest, and exercise.
JRhea777 8 months ago 3
@JRhea777 Especially exercise :) not enough emphasis is placed on that one on cfers, in my opinion. My doctors estimate between 3-4% lung function per year can be saved via regular exercise.
Ikarimalice 8 months ago
Amen Mr. Filmmaker!
Please everyone feel proud and excited that a movie with substance and adventure is being released about CF! It is a win win for everyone.
Mitch
CF survivor- s/p double lung tx.
mgreeny1 8 months ago 18
@mgreeny1 I am in total agreement with you!!!
I know you by the way.
Brooke-->Girlfriend of CF Survivor double lung tx. Michael, 10/1/10
sexysquirrel1214 8 months ago
@sexysquirrel1214 Did Michael get his lung transplant in NJ in Newark/Livingston Hospital? Just wondering only because my niece had a transplant there and there was another patient there named Michael..
Hope he is doing well. God Bless you both...
I cant wait to see this movie.... We have been living with CF in our family with 2 sisters for over 22 years now and I just wish there was a cure for CF......
jkckjkwk4 6 months ago
@jkckjkwk4 no, we were listed in chapel hill, north carolina.
God bless you as well. and hope all is going great
sexysquirrel1214 6 months ago
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Cant wait to see the movie...
jkckjkwk4 6 months ago
Everyone!
I love debate and hearing what you guys think of the movie, BUT let's stop the CF on CF crimes!!!
This movie is about raising awareness and learning to live!
The rest is up for interpretation.
Sincerly, the filmmaker!! :)
maximusfilms 8 months ago
@maximusfilms I agree. But what you've done and what you're doing is wonderful. Raising awareness, educating people about this disease is fantastic. We as CFers can only go so far into explaining it to people who have no idea what it is. You're putting our words into pictures. Im stoked to see the movie once it hits. You, my friend have many years left like the rest of us. Keep it up.
JRhea777 7 months ago
@Ikarimalice Thank you. I dont know what your problem is, this strong need to be right. I have told you my doctors have told me I'm not terminal. Why cant you accept that? What gain do you get typing to teenage girls over the internet telling them they're going to die? Why cant you just leave me be? You had me in tears last night. I firmly believe I am going to live to 80 whether it be from a cure or lung transplant. So I'll keep opstimistic and you keep putting people down if it makes you happy
DustBunnie92 8 months ago
whats the name of the song at beginn ? :O
levkesina 8 months ago
Right, I have Cystic Fibrosis and basically within 24 seconds I was pissed off. The moment it is declared that the main character has been preparing to die his whole life, my jay dropped. That's bullshit! I'm 23 and plan on outliving everyone! My main concern is kids with CF watching this. The trailer implies that this is an inspirational tale. Which is basically him going abroad, because apparently that would be hard for us? And don't get me started on the bit WHERE HE'S TRYING OUT COFFINS.
jagetherage 8 months ago
@jagetherage Plan all you want. It doesnt change reality. I am 28 with CF. My health now has dropped significantly since when I was 23..prepare yourself. Find optimism amongst the reality of your health inevitably declining. Don't try to seek it out by blinding yourself.
Ikarimalice 8 months ago
@Ikarimalice So being optimistic is blinding yourself from the truth now? Jesus H Christ. I'm not saying people don't die, I've lost a friend to CF when she was just 16. My problem with this trailer this is the idea that we spend our whole lives counting down the days. People with CF are known for their positive outlook, because that's the best way to deal with things. Am I going to get worse? Probably. But I'm not gonna dwell on it.
jagetherage 8 months ago
@jagetherage Of course not. I said claiming it isn't terminal is blinding yourself from the truth. Denying reality while saying it's cynical or pessimistic is blinding yourself. People with CF need to be more angry and frustrated and less happy fluffy sugarcoated. Most people out there don't know what CF is, so our hope and research is delayed because instead of trying to raise awareness for just how bad CF can be, we're trying to say "it's okay..I'm not terminal!" when you are.
Ikarimalice 8 months ago
@jagetherage THANK YOU!! EXACTLY WHAT I'VE BEEN SAYING!!!
DustBunnie92 8 months ago
@jagetherage I`m 13 with CF and I kind of agree. But I honestly worry about my disease and care about it but I also actually care about just living my life and not letting CF get in my way and ruin my life. And watching things like this makes me sad and mad.
~Gwen.
iamgreengirl123 4 months ago
@iamgreengirl123 I understand things are hard but you shouldn't worry. All you should do is try and live life to its fullest.The fact that this video upset you is the reason this trailer pissed me off so much. They had the chance to be inspirational and motivating but instead its just morbid. Just ignore it though. What do they know? All you should focus on is trying to be the best Gwen you can be.
jagetherage 4 months ago
This has been flagged as spam show
I can't wait to see this!!!!!! :) it looks amazing!
xoMUSICismyESCAPEox 8 months ago
@Valerieannmorrell you're right, that is upsetting...but, they may have cut out the rest of the description. you know how they do. (:
and to everybody else...why the heck does it matter whether we say "terminal" or "life threatening"? hell, LIFE is terminal!! no matter whether you're sick or healthy! the fact is that this disease KILLS. all too many at a much, much too young age. so instead of arguin bout the terminology why don't you spread the word and awareness?!?! that would help CURE CF!!!
sexysquirrel1214 8 months ago
the description of cf is completely and utterly wrong. i'm kind of upset by that. it needs to be fixed.
Valerieannmorrell 8 months ago
...which leads to the malnutrition and the need to take digestive enzymes. Furthermore, this thick mucus is hard to clear out of the lungs and often becomes colonized with bacteria leading to respiratory infections. Lung infections are the real issue with CF.
mrmach 8 months ago
The description of the science of CF is incorrect.
He says "my body lacks the proper digestive enzymes to keep my pancreas clear of cysts." This is simply not true. In CF an ion channel found throughout the smooth tissue of the body (known as the CFTR) is defective and this prevents the flow of sodium, potassium and chloride. This leads to thicker than normal mucus. This thicker mucus plugs the pancreas preventing the pancreatic digestive enzymes from being secreted into the GI tract.......
mrmach 8 months ago
@Ikarimalice How dare you. ''Perhaps you'd like to tell their parents it's a life threatening disease and not terminal''. Thats a horrible thing to say to me!! Of course I know you can get to a point where it's terminal. I also have lost friends. What I'm saying is it's not terminal from birth!! My brothers lung function is in the 90s and whoever can say he is ''Terminal'' is an idiot. It's life threatening your whole life and not terminal until the doctors say theres nothing left they can do.
DustBunnie92 8 months ago
@DustBunnie92 I don't think anyone was trying to be offensive. "Terminal" is a clinical descriptor of a disease, as well as describing the patient. In this case, it's correct to say that CF is a terminal illness, as it will eventually kill us. It's not correct to say that a patient is terminal until, as you say, end stage. We all need to be careful about using that word and making sure we use it correctly, even if we don't like the connotations it carries. Oh, and...39, male, double ΔF508.
xlbrooklyn 8 months ago
@DustBunnie92 Terminal means terminal. The word terminal is not indicative of a time frame. Yes you are terminal at birth. (Please spare me the "we all are!" excuse). It's actually the opposite of what you're saying. It's terminal your entire life, but it becomes life threatening when your body is too damaged and scarred to recover from whatever is going on. The life threatening infection is the result of the terminal disease..get it?
Ikarimalice 8 months ago
@Ikarimalice Dont get cocky with me and be so insensitive about it!! ''Get it?'' < dont talk to me as if I'm stupid either. Doctors tell people different things. As I have said in an earlier comment. I have 60 year olds in my clinic and my friend has a new patient in her clinic who has just been diagnosed at 75 and refuses to do treament. If your doctor has told you youre terminal and you believe what he says thats fine. My doctor says it's life threatening and that I'm definatley not terminal.
DustBunnie92 8 months ago
@DustBunnie92 It isn't cocky, it's educated. Yes there are varying degrees of severity. Put it this way..if you're a very mild case at 23 where you do not need antibiotics and your lung function is still roughly 100%..you're in great shape. If you require IV treatments that means your bacteria are already advancing and evolving and inevitably will resist antibiotics. Hope lies in new treatments, but there's a difference between a 60 y/o with a very mild case and a 23 year old who needs IVs
Ikarimalice 8 months ago
@Ikarimalice So youre saying Im not educated. Do you have a Doctors degree or a degree in google? As I said before, my doctor says I'm not terminal. I'm 19, 40% lung function and on Iv's 4 times a year. You can listen to your doctor and I can listen to mine. My friends lung function is 21% for 9 years and he has a full time job. I have enough to deal with and enough stress and dont need you telling me I'm going to die on top of everything when you dont know a thing about each individuals case.
DustBunnie92 8 months ago
@DustBunnie92 I have CF. I know what CF is. It's a terminal disease. This is not up for debate. You can argue semantics all you wish, but it does not change facts. What your doctor is telling you is *you* are not terminal right now, but your *disease* is. Also, politely as possible, there's no way your friend dropped to 21% and remained there for nine years.
Ikarimalice 8 months ago
@Ikarimalice Also, its the complete truth about my friend. So you're abviously not as educated as you think. I'm not going to reply again and I'd appreciate it if you didnt either as I am sick of these comments making me so angry. Go by what your doctor tells you. If someone elses doctor tells them different ACCEPT IT. You dont know what they meant behind their words either. So stop telling everyone theyre wrong and that theyre going to die.
DustBunnie92 8 months ago
@DustBunnie92 I know what CF is, it's as simple as that. As for your friend..claiming that is like trying to tell an auto mechanic "yeah my transmission died but I've been driving my car fine for 9 years now despite it". I've known several people who have died with more lung function than 21%. You do not get that low and live fine for 9 years. I believe your friend probably works and is still alive, but if he/she is at 21% now, they certainly weren't 9 years ago.
Ikarimalice 8 months ago
@Ikarimalice ''People with CF need to be more angry and frustrated and less happy fluffy sugarcoated.''. Thats made me feel so much better. I now know you're only here to bring misery to everyone because you're very unhappy with your own life. It's like all my friends told me last night that you were calling me terminal because you are very unhapy with your own life and take it out on others. As for my friend - believe what you want, he has his tests results posted since 2001.
DustBunnie92 8 months ago
@DustBunnie92 No, I'm here to hope for proper awareness. I've lost a dozen friends in my life with CF already, two of which were exceptionally close to me, so please tell me if CF isn't terminal then how did that happen? If it isn't terminal, why would you need a lung transplant? Where are his test results posted? I'd love to see them. I'd love to know how opportunistic bacteria can infect and scar lungs to 21% and then just decide to stop for 9 years when most would be near death by then.
Ikarimalice 8 months ago
@Ikarimalice Iv'e lost people from cancer. Just because they've died it doesent mean everyone who gets cancer is going to die. Also, I swear on my families life I was in college full time 2 years ago with 22% lung function and was never offered lung transplant. I have been 25% to 35% up and down for 2 years and am doing fine and have NEVER been offered a lung transplant. 2 weeks ago I got the news I am back up to 40%. I'm not going to give you a link so you can spread misery to him aswell.
DustBunnie92 8 months ago
@DustBunnie92 Cancer is not CF. I'm not spreading misery, either. In none of what I said am I saying you're dying, or you will die shortly. I'm saying it's unrealistic to say it isn't terminal, and to look at the facts. Needing lung transplants at all, needing IVs four times a year to nuke the bacteria in your body, needing routine hospital appointments and dropping to 20-40% function, etc. It's all indicative of a terminal illness. That's simply it.
Ikarimalice 8 months ago
@DustBunnie92 And you generally wouldn't be offered a transplant list until you're at 20% consistently. Infections can knock you down from 40ish % to 20% but only after a period of time(anywhere between a couple weeks to perhaps a couple months) of strenuous IV antibiotics with no signs of improvement(suggesting bacteria is now significantly resistant and unable to be treated) will they say a transplant is needed to save your life.
Ikarimalice 8 months ago
@Ikarimalice ''I am telling you you are going to die of CF eventually'' so yeah you told me I'm going to die. Just carry on with your morbid life, I cba writing anymore. I have better things to do with my time.
DustBunnie92 8 months ago
@DustBunnie92 Eventually CF kills you, yes. Not right now. The "when" is the frustrating. part. You may live until you're 35. You may also get resistant just a couple years from now. Morbid? Like I said..perhaps it's just the feeling that the refusal to look at it in that light(or dark, if you will) is what keeps CF research at a snail's pace no matter how many people die. How many CF deaths have to occur in people with "optimistic" mentalities before they admit the dark side to CF is there.
Ikarimalice 8 months ago
No a lot of my fiends are on transplant at 30%. thats probably the base line here in britain but since I could hold full time at college they said my body is strong enough to cope. I havent been 40% in about 2 years so it's pretty big for me. I have been consistently 28% (34% at the highest which was usually a one-off) for 2 years. I've raised a lot of money for CF by spreading awareness so I'll keep doing what I'm doing in a nice way with inspirational ppl and you carry on having a morbid life.
DustBunnie92 8 months ago
@DustBunnie92 Sorry for the confusion, I meant 20% consistently for you in that example. You may call it morbid, that's fine, I call it realistic. Though honestly, I had to have surgery to stop my lungs from bleeding in one particular location, and there's nothing not morbid about coughing up a half liter of blood, let me tell you. So if I'm morbid, perhaps it's because my individual case of CF has been.
Ikarimalice 8 months ago
@Ikarimalice I have a port, G-tube, and I'm living off my right lung as my right one has died. Also had times where I've coughed up tons of blood. I'm not making it a contest just saying it hasnt been easy for me either. I'ts probably just my positive attitude then and lets me live my life to the full happily. Anyway I'm off out. Try to have a happy life without bringing others down is all I can say.
DustBunnie92 8 months ago
@DustBunnie92 Never would suggest you had it easy. Enjoy your night.
Ikarimalice 8 months ago
@DustBunnie92 God Bless you!! And I have a port too!
~A CF patient
iamgreengirl123 4 months ago
@DustBunnie92 And I think people need to be more angry and frustrated because CF lacks awareness and funding for faster research and development. Why would people want to donate money to our cause when people like you sit back and say "it's okay, I'm not terminal" when you are? It's sad, truly sad that the mentality of people in your life is to insist it's my life I'm unhappy with because I no longer believe in blind optimism in the face of a progressive disease.
Ikarimalice 8 months ago
@DustBunnie92 This is all moot, though. Next appointment you have, ask your doctors the right questions. "When does CF turn terminal then?" And "at what rate do the bacteria build resistances?". They won't have specific answers, but the answers they give will show you what lies in the future of anyone with CF, and that future is the reason for frustration and the NEED for PROPER awareness.
Ikarimalice 8 months ago
@DustBunnie92 Also, that is the whole point. I am not telling you you are going to die right now. I am telling you you are going to die of CF eventually, if it wasn't terminal then you wouldn't be 19 with a 40% function. You'd be 19 with a 100% function because no disease would be progressing through your lungs, scarring them irrevocably. I wish you luck and truly hope it stabilizes as long as possible, because having CF I do know how much it sucks, but reality is reality and it's terminal.
Ikarimalice 8 months ago
CF is not a terminal illness for all that have it! there are a lot of people that have CF but they have not serious health problems. anyway, many ways have been found to treat this and i think that future will bring to us the best solution to cure this! and don't forget, a gene therapy has been developed for CF (but it is not used widely due to problems with the viruses that carry the "right" gene to the lungs of the person that has CF)
giko7 8 months ago
Comment removed
Ikarimalice 8 months ago
@giko7 Giko, it is terminal. By "not all" you're talking 1 out of 1,000 will have a mild enough case to not be too bothered. The rest die young. I myself am 28, and am in average health, but the real test if you make it this far is what happens after 30 when your body begins to age. The rest I've known with CF have mostly all died between 15 and 25. As far as gene therapy is concerned, there is no treatment. The issue with the viruses isn't about carrying the right gene, it's that the only
Ikarimalice 8 months ago
@Ikarimalice ok, really? wow i'm really sorry if i insulted you then :( it's just that the few people i know that have CF, are not in a serious condition and i don't know what's the real deal with this. sorry
giko7 8 months ago
Comment removed
Ikarimalice 8 months ago
@giko7 viruses capable of penetrating the immune system enough to deliver the new genes are too strong to just inject into the body without mass research to break down the proteins to utilize their bypass capabilities without the virus(IE ebola was one of the ones talked about). The other issue is gene therapy may replace 60 billion or someodd genes in the lungs, but your immune system will eat them eventually. Sooner rather than later. A better hope is in stem cells.
Ikarimalice 8 months ago
@Ikarimalice wow ok, it seems that what we learn at school it's far, far away from reality!!! i'm neither a doctor to know all this, nor sb that has done a very good research on CF. I just know some things from school... and i'm like :O now that i realize there are a lot of problems with these methods. what about stem cells? i'm going to search for this, thanks :)
giko7 8 months ago
@giko7 Essentially stem cells have shown that if you take an organ and chemically strip them of their donor cells, you can use stem cells to make those organs to adapt to your cells as opposed to the donor's(which would no longer exist) and subsequently ridding organ rejection in transplant and "curing" CF. I quote it because the liver would still be affected as would the stomach and pancreas, but the most fatal part of it would be fixed. google stem cell organ transplant for info :)
Ikarimalice 8 months ago
@Ikarimalice ok thanks :) myu previous comment was a reply to an old post
giko7 8 months ago
It's life threatening!! NOT TERMINAL!! I get so offended. Dumbasses.
DustBunnie92 8 months ago
@DustBunnie92 Having grown up with it myself, I know many can live a long and relatively uninhibited life - having been said, to the best of my knowledge, and experience, there is no cure and all who have CF will eventually succumb to some part of it's effects?
Which is why we need to keep raising awareness and supporting research!
maximusfilms 8 months ago
@maximusfilms There is also no cure for Diabetes or Athsma. You can die from them but they're not terminal. I just get really annoyed at the word ''Terminal'' as if were all doomed to die from birth when we most certainly are not. If I thought my illness was terminal I wouldnt bother living my life. Sorry the word just offends me so much!
DustBunnie92 8 months ago 2
@DustBunnie92 Terminology aside, that exact sentiment "..If I thought my illness was terminal I wouldnt bother living my life..." is what inspired the film.
To me, the knowledge of the impending threat is what inspires CF'rs to live life to the fullest, and inhale every breath in this world!
All the best !
maximusfilms 8 months ago
@DustBunnie92 It's terminal. I have it, and I have already lost a dozen friends to it all before the age of 25. Perhaps you'd like to tell their parents "it's life threatening, not terminal". You have CF..you'll die of it. There's a very, very select rare few(I'd say under 1%) that have mild enough cases to live 'normal' time spans.
Ikarimalice 8 months ago
@Ikarimalice I have had similar experiences to you, but let's try to remember people experience and cope with their illness in different ways.
I'm happy to be a part in raising awareness of CF - surely there's going to be people that love how I did so, and others that don't like the way I did.
Discussion is good though!
maximusfilms 8 months ago
@maximusfilms Oh absolutely. Awareness is fantastic and I certainly have no issue with the film itself as far as I can see :) It was painful to watch the trailer, but in my mind that is certainly a good thing. I'm glad you're making a film on it. I always wanted to, and even took on a film internship a few years ago, but that was when my health got worse and Iw as forced to drop it..lost most of my motivation after that.
Ikarimalice 8 months ago
Looks good!
mobrist 8 months ago
i have CF, so I can't wait to see how different this will be from my life! :) I just saw 65_RedRoses the other night, and I cried a lot, because one of my really good friends with CF also got a lung transplant like the girl in the film did, but he didn't make it :( I miss him a lot, snd I'm hoping this movie will raise awareness of what me and people like me are going through.
aspiringsinger15 8 months ago
@aspiringsinger15 Most with transplants don't make it far, sadly :(
Ikarimalice 8 months ago
It looks amazing!! :) So excited.
SaraWiley 8 months ago
Will definitely see this then buy it when its on DVD. Have a son with CF.
daelwill 8 months ago
Looks AMAZING, Cant wait to see it!!!!
mistwinter99 8 months ago
Looks pretty realistic!!-from of a mom of two kids with CF! Can't wait to see it!
whamcf 8 months ago
@whamcf Everything except he seems like he's in ok health for most of the film then takes a sharp sudden turn for the worse..generally that doesn't happen if you're still capable of walking around and going on a trip without oxygen. That's where "it's a movie" comes into play, and I'm glad..I hope more people see how rough CF gets.
Ikarimalice 8 months ago
III CCCCCCCANNNNNNNNOOOOOOTTT WAIIIIIT!
wowitsarainbow 8 months ago
i can't wait to see it! when does it come out?
celiaroxursox 8 months ago
It's currently in post and due for cinema release worldwide
stealthmediagroup 8 months ago 8
@stealthmediagroup are a portion of the profits going to the CFF???
sexysquirrel1214 8 months ago
@sexysquirrel1214 Yes, 20% of net profits are being donated.
stealthmediagroup 7 months ago
stuuuuuuuuutes
METSUCK07 8 months ago
it is really amazing. i love you max. you are great actor :)
60sn 8 months ago
aww, this looks really good!
alis0nhick3y 8 months ago
Is this going to be shown in cinemas worldwide like Ireland or is it just in a small selection of cinemas do you no?!? :)
Bullman1000 8 months ago