I am thrilled and delighted to be here. Just a super quick Hello for now, as I figure out exactly how this platform/forum works. I am with Right2Breathe, albeit new with them, but I have had COPD for many years.
I am very involved in COPD advocacy work in many aspects. I help with research, conferences, lobbying in DC, and with the COPD Foundation.
I look forward to chatting with all of you, sharing my perspective and views, and hopefully being able to give some tips and tricks that can help make your lives easier.
Glad to be here!!!
John Linnell in Wisconsin
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R2B_John
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I think this is the first time I have ever read that someone is thrilled and delighted to be here, that made me smile, then your picture made me smile. Thanks for making me smile, and welcome.
Well,,,it's MY COPD, so I choose to "own it", to learn as much as I can about how to best live with it.......and to share what I may have learned along the way with others.
Diagnosed in late '05....left the work force in late' 11.
Become more and more involved in both patient advocacy as well as working with researchers. I also consult with big pharma to encourage them to become more patient-centric.
I am a somewhat "involved" patient, so I know enough to not let something grow into an exacerbation terribly often. I "pull a Barney Fife" and get on antibiotics and a short dose of prednisone to "nip it in the bud".
I just got back from a bucket list cruise in the Mediterranean and then a Transatlantic cruise home......so yes, I manage.
I actually went to Kindergarten in Cambridge, England,,,,,,,,so I suppose I could say that I am "Cambridge educated"....LOL.
I do love our friends from that side of the pond as well. In fact, I recently co-wrote an article that was published in a peer reviewed medical journal on exacerbations with Dr. John Hurst from the NHS and University College/London.
I may, but not at the moment. I am currently involved in over a dozen FB groups, the COPD Foundation's COPD360Social, as well as numerous panels, committees, projects, etc. I do know Carole Scrafton, the Liddle's, and some other folk in Britain that are quite active.
Hi John nice to meet you. I tick "Like" on Redsox as we all know him here and his valid contributions, and of course he's also a very nice person. Here at BLF "Healthunlocked" we are a Huge Cosmopolitan Family and Have all got to know each other over the Years, so we are well Knowledgeable with most "COPD" Umbrella Terms. The Help here from Patients and Admin is the Best. Hope you Join us on our Forum, your Help and input will be very Welcome. Very Best Wishes to you. Carolina . XXX
John Walsh was the one responsible for my becoming so involved in advocacy! He was truly a legend and great man. In defense of the Foundation he founded and in response to the comment about no headway being made: Sadly, the more we learn about the lung, the more we realize how little we know and how much is still to be learned. As far as any specific advances therapeutically, you are correct. But, there have been no breakthroughs by the NIH, medical research schools, pharma, industry, or anyone. All anyone seems to do therapeutically is refashion and reformulate existing LAMAs, LABAs, and ICS therapies.
(from a pharmacological angle, the introduction of a couple nebulized LAMAs has been the newest and most helpful new release and advancement.
The Foundation, being a non-profit, certainly doesn't have the means to fund research itself. They do, however, through the COPD PPRN (Patient Powered Research Network as funded by PCORI), work with researchers in helping design protocol and assist as co-investigators in several studies a year. I am on the Governing Board of the COPD PPRN and witness firsthand studies that do help us learn more.
The Foundation also works with Policy and is always calling upon our elected officials to support research dollars allocated by Congress and supporting the bi-paritisan and bi-cameral COPD Caucus. As we all know, politics in America is a slow moving process.
Regarding how involved pharma is with the Foundation: I was honored to be invited to the COPD Foundation Partners meeting as a patient representative in Washington DC a few months ago. We have corporate partner relationships with 20 different pharma and industry corporations: copdfoundation.org/About-Us...
Part of these relationships, at least the part that I as a patient am involved in, is working with many of these corporations in the goal to increase patient-centricity. Via the Foundation, I have been asked to join patient advisory councils or to speak at meetings with 6 different major pharma companies. And no, I am not one to be a mouthpiece or make "nice-nice". When I speak to pharma, I tell them in no uncertain terms that they need to involve the patient even more at every step of the way....from product conception to development to launch to providing even more patient assistance for those in need. Slow and steady, but I feel it is making a difference!
Concerning how dated the material is, the material is as old or as new as the current information provided by the CDC, NHLBI, BRFSS, and what there actually is available to be used. I, too, find it frustrating that we don't have more current data. Some things are quite current, such as the newly released GOLD report from the meeting a few months ago in Philadelphia. (not sure if on the website as yet or not, but GOLD is always filled with good information.) The Foundation also just released a superb app for both Apple and Android that can be used by both patients and doctors: COPD Pocket Consultant Guide. It is absolutely free and incredibly helpful. I hope you check it out!!
Famous People: Much of this is beyond my scope and involvement. I do know that the recently released movie about Leonard Nimoy and his COPD had a great deal of involvement by the Foundation. I was also involved, just at the early stages of this film when I spoke with Julie Nimoy and David Knight (Leonard's son-in-law) to discuss what should be addressed and what to focus on. We continue, I believe, to work with Danica Patrick who speaks out about awareness. We have great friends in Ted Koppel and his wife Grace Anne Dorney Koppel whom I count as personal friends. Ted and Grace Anne speak on television, at conferences, on Boards, and at NIH conferences countless times to help the cause of earlier detection, need for more Pulmonary Rehabilitation, need for more research dollars.
All in all, I don't find the COPD Foundation complacent at all. They do what they can with the funds they have. COPD is the 3rd leading killer disease in our country and 155th in funding. We need to remember that the Foundation can't actually fund the many millions needed for more research, but rather the Foundation provides tools to help patients, pushes for more awareness, pressures government to do more and fund more, and works for more education about COPD - both to create awareness as well as educating the COPD patient.
Wow,,,,,,I didn't expect to write so much, but there was much to address. I think that no matter what the organization, there are good things as well as things that can be improved upon. I am in hopes that this forum doesn't seek to dwell on what is not liked about any organization, but rather to speak of the good that all the various groups do.
Enjoy the balance of your weekend, thanks for reading my diatribe, and as always,,,,,,Breathe Easy!!
Important to understand that asthma is not COPD, however some clinicians feel that "reactive asthma" does fall under that umbrella. I agree with you about research on each separate disease and for the most part that does occur. Bronchiectasis along with NTM DOES now have it's own patient research registry AND its own online community!! When I have sat on medical peer review as the patient reviewer, emphysema and chronic bronchitis are in many cases researched separately,,,,,which make sense as they affect the physiology of the lung in different ways.
Meg,,,,I won't fight you. Your resolve is predetermined and nothing I can or will say will sway you,,,,,,that is simply what the internet has reduced itself to. I will respond, though. Cut and Paste.......I freely admit that I was tempted to call someone at the COPDF and ask how I should best address your issues,,,but then, I simply responded with my own views and what I have done to further the cause of advocacy, education, and awareness. I spoke from my heart and shared what I have actually experienced and knew to be true because I had lived it. We can't "create" new people. So yes, the same people are mentioned. As far as stigmatizing smoking, you are so so so far from the truth, in fact I take umbrage in your remark about that. The Foundation, and myself, make it incredibly clear that 20 to 25% of COPD patients have never smoked in their lives. The Alpha-1 Foundation is an offshoot (the Walsh twins both had Alpha-1) of the Foundation. As far as the "majority of newly diagnosed persons whom have never smoked", please provide something to show that is actuality,,,,,,I might learn something,,,,never heard that before, ever.
We all would LOVE a cure. I highly doubt that a very low funded Foundation is going to give you what you want so quickly. Again,,,,,3rd leading killing disease yet 155th in funding. Compare that to the diseases you cited,,,,,Cancer, Heart disease, and AIDS. You seem to know your numbers, so I won't bother pulling them up,,,,,but you can clearly see the disparity.
You seem to have a real "beef" against the COPD Foundation, and I won't argue with you anymore,,,,cuz this is supposed to be a support site. But I assure you, I am certainly not a mouthpiece for them. My CV goes far beyond just my involvement with the Foundation.
I remain in service to all with COPD and hope we all will Breathe Easy,
I didn't berate you at all. In fact, upon review of my response, the only thing in my reply directed towards you was that you have a predetermined resolve against the Foundation; that were were either wrong or misinformed regarding the Foundation's statements about smoking and COPD, and that I felt you had a "beef" against them.
I don't work for the Foundation. They are just one group of many that I involve myself with.
I didn't realize my comments would be taken as defensive.... I was merely trying to correct the many things you stated about the Foundation that were quite simply false and untrue. Somehow you seem to expect them to be underfunded yet come up with a cure.
Again.... I would have hoped this forum would have been more positive rather than spending all this time attacking what many consider a Foundation trying to do good. I am glad your foundation of choice, the BLF, does good work. That surely shouldn't give your license to disparage others. I wouldn't dream of using this public forum to welcome a newcomer by attacking a non-profit he or she mentions.
I will be very careful with any future comments and ensure they are terribly generic.
.....and my comments are misunderstood by you. I only go by what was said. I thought I had addressed the factual nature of your statements about the Foundation. Things such as the insinuation they should find a cure,,,,,when they certainly haven't the funding for independent research, or that pharma has little to no involvement with them, or they are complacent, or that they do nothing worthwhile. I tried to address each point in case. Some of your statements are opinion,,,,which is entirely your right; and some were simply wrong and un-factual, which I attempted to explain,,,,,,,,,,,,and then it became a back and forth. If you need to have the last word, go for it. I feel I have run into a wall. I am an independent advocate and consult with many corporations,,,,I have no special due owed to the COPDF, although I do admire their work. I took nothing you said against myself personally, so I really don't need to think about that. I fully agree that we need to move into 2020 and fight for progress. I have ideas as to where this progress will come from and would love to engage in that conversation with you and others. But simply put, you did attack the Foundation. I do support them and took umbrage. I do not represent them, but yes, I am associated with them (so yes, I understand the semantics and your earlier analogy).
There is research on many fronts; some of which shows progress more quickly and some that may take many many years.
It is both frustrating and exciting that different phenotypes are being identified which is helping to target research.
Also, it is very refreshing to see that industry, pharma, and research institutions are becoming more patient-centric and involving the patient perspective. More and more studies now incorporate a Patient Co-investigator or Patient Advisor.
Sorry again research into emphysema I should have said as that's obviously my personal focus, which ones are progressing quickly? And when you say quickly what does that mean in relation to years...sorry for all the questions
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I surely agree. Glad you joined the group. 
Further introduction on my COPD.
Any help please.
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