North Carolina Advances in Stem Cell Therapy for Lung Diseases Could Lead to Clinical Trial Soon

Magdalena Kegel, PhDby Magdalena Kegel, PhD

In COPD, Cystic Fibrosis, Idiopathic Pulmonary Fibrosis, News.

North Carolina Advances in Stem Cell Therapy for Lung Diseases Could Lead to Clinical Trial Soon

University of North Carolina Health Care researchers have made strides toward a stem cell treatment for lung diseases such as pulmonary fibrosis, COPD, and cystic fibrosis.

In fact, they are discussing the start of clinical trials with regulatory authorities.

The team discussed its work in two recent studies. One proved that it is possible to isolate lung stem cells with a relatively non-invasive procedure. The other showed that stem cells reduce fibrosis in rats with pulmonary fibrosis.

The first study, in the journal Respiratory Research, was titled “Derivation of therapeutic lung spheroid cells from minimally invasive transbronchial pulmonary biopsies.” The second, in Stem Cells Translational Medicine, was “Safety and Efficacy of Allogeneic Lung Spheroid Cells in a Mismatched Rat Model of Pulmonary Fibrosis.”

“This is the first time anyone has generated potentially therapeutic lung stem cells from minimally invasive biopsy specimens,” Dr. Jason Lobo, director of the university’s lung transplant and interstitial lung disease program, said in a press release. He was co-senior author of both studies.

“We think the properties of these cells make them potentially therapeutic for a wide range of lung fibrosis diseases,” added Dr. Ke Cheng, who led the studies with Lobo. He is an associate professor in North Carolina State University’s Department of Molecular Biomedical Sciences.

The research team had previously homed in on stem and support cells they could isolate from a lung tissue sample and grow in a lab. The tissue formed sphere-like structures in a lab dish, prompting the scientists to call them lung spheroid cells.

In 2015, the team showed that these cells had potent regenerative properties in animals with lung diseases. In fact, the stem cells they cultivated outperformed another type called mesenchymal stem cells.

Their latest project involved gathering lung spheroid cells from patients with various lung diseases. They used a procedure called a transbronchial biopsy that can be done in a doctor’s office.

“We snip tiny, seed-sized samples of airway tissue using a bronchoscope,” Lobo said. “This method involves far less risk to the patient than does a standard, chest-penetrating surgical biopsy of lung tissue.”

From this tiny piece of airway, researchers gathered stem cells, then allowed them to multiply — because stem cell treatments require infusions of millions of such cells.

When they injected the cells intravenously into mice, they discovered that most found their way into the animals’ lungs.

“These cells are from the lung, and so in a sense they’re happiest, so to speak, living and working in the lung,” Cheng said.

The team then tested the treatment in rats exposed to a chemical that triggers lung fibrosis. The lung spheroid cells gave rise to healthy lung cells, reducing both inflammation and fibrosis in the animals’ lungs.

“Also, the treatment was safe and effective whether the lung spheroid cells were derived from the recipient’s own lungs or from the lungs of an unrelated strain of rats,” Lobo said. “In other words, even if the donated stem cells were ‘foreign,’ they did not provoke a harmful immune reaction in the recipient animals, as transplanted tissue normally does.”

The researchers said that in humans their goal would be to use patients’ own stem cells to minimize the risk of immune reactions. But because large quantities of cells are needed, it might be necessary to gather cells from healthy volunteers or organ donation networks as well.

“Our vision is that we will eventually set up a universal cell donor bank,” Cheng said.

The team is in discussions with the U.S. Food and Drug Administration aimed at starting the first human study by year’s end. The first trial would include a small group of pulmonary fibrosis patients. The team also hopes their spheroid stem cell therapy will help patients with other lung diseases.

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171 comments

    • Gary J Foutz says:

      Hello, My Name is Gary Foutz. I live at 5910 Dry Hollow Rd Salem Va.Phone 540-384-2689.
      My Pulmonary Dr at The Salem V.A.Hospital told me I have Pulmonary Fibrosis from possibly using a drug called Amiodarone for a heart palpitations and was on it a good while.
      I would be interested in a clinical trail that you may have soon.

      • Magdalena Kegel, PhD says:

        Many of you wonder how to go about to participate in the trial. At the moment, there is no information on who will be eligible for participation since the researchers are still discussing with regulatory authorities. Once that information becomes available, we will report it.
        It is also difficult to speculate about the potential benefits in humans before a trial. Researchers hope that it will, at least, reduce scarring and fibrosis.

        • Mack Sprouse says:

          I am being evaluated for a transplant, but would much rather have a chance to become better without the risks involved with the side effects of the medications. There are thousands of patients that would be willing to take the chance at living better being involved in a trial.

        • T. C. McKean says:

          Thank you for the information you have provided. It stopped me from searching for contact numbers for now. I have only one lung and is slowly getting weaker. I run out of breath with very little exertion even with inhalers. Am I a good candidate for the trial? Oh yes I am poor and only have medicare and disability income. Thank you for your time reading this and any response you may provide.

  4. Carolyn Schmidt says:

    I too suffer from bronchiectasis – caused by many years of smoking and bronchitis infections. Have heard the Lung Institute in Tampa is doing stem cell research but my pulmonary said the therapy is not quite perfected. Will be anxious to hear more about this.

    • shirley says:

      I too have bronchiectasis from many bouts of bronchitis leaving me with scarred tissue in my bronchioles. Had a dr. who could have helped early on but didn’t happen that way. want to know more about stem cell therapy.

  7. Magdalena Kegel, PhD says:

    Many of you wonder how to go about to participate in the trial. At the moment, there is no information on who will be eligible for participation since the researchers are still discussing with regulatory authorities. Once that information becomes available, we will report it.

    It is also difficult to speculate about the potential benefits in humans before a trial. Researchers hope that it will, at least, reduce scarring and fibrosis.

    • Sam says:

      God’s speed, on making this happen. Advancements for these millenniums old diseases is so very long over due. It’s time, passed time for these diseases to be in the forefront. Please don’t let the pharmaceutical companies buy you off, saving lives and a Nobel Prize is more admirable, and history making. Looking forward with hope in you!!!

    • jeanette Atwell says:

      I look forward to the feasibility of possibly getting in a clinical study for my COPD, very keen to be accepted in a Stem Cell Therapy Trial,
      Sincerely,
      Jeanette Atwell- 352-613-7276

    • Ron Weaver says:

      I am very interested in participating in your clinical trial when ready. Have copd, enphysema end stage. Went thru screening for Temple clinical on IBV valves. Sadly my lungs are too diverse, for this trail. This seems to be my only chance.

    • Theresa Jhaysonn's mom says:

      Is there an update? I noticed your comment was from Aug/2017 Are they any closer to a trial date at this time My son has BOS from a stemcell transplant.

    • Jeanette Atwell says:

      I am very interested in being a part of the clinical study, as I could not afford the price of Stem Cell Therapy offered in Florida at different clinics. I have participated for a period of 12 months in a clinical study involving medicine for COPD. It was very beneficial !!
      Sincerely,
      Jeanette Atwell

  13. Susan Heckman says:

    Watching this with interest from Durham, NC. My focus is women with the rare disease, LAM (Lymphangioleiomyomatosis). Many of us with LAM take mTOR inhibitors (Rapamycin, Everolimus)to slow progression. Thanks for the article Dr Kegel! Best Wishes to UNC for getting this study funded and running!

  15. Annette Baker says:

    My 82 yr old husband was diagnosed with IPF in April 2009 by our local pulmonologist, which was confirmed by
    Dr Keith Mayer, UW Hospital, Madison, WI. He was given 28 yrs – 2 yrs. However, he continues to play regularly with a 16 pc swing band, a 12 pc church band & another smaller church band. He also makes/paints tin soldiers & dioramas up to 10 hrs a day. I believe his expiration date needs to be revised. Would he qualify for your next IPF research study?

    • Magdalena Kegel, PhD says:

      Hi Michael,
      I don’t have any information on the potential to treat PAH, unfortunately. But the research is still in an early stage. We will report on any updates as they become available.

      • Megan Shafer says:

        Hello, look at these people’s replies to one hopeful stem cell research treatment/cure.

        People are desperate…..breathing is everything, if you can breathe, you can manage other diseases and survive, most generally.

        This disease as we all know from our advanced reading…had been put behind…because it’s related to smoking…they are finding it a so many other things…is it not heartbreaking to these person’s with lung diseases, that a person who will do opiates over, and over again…is considered more important…curing these lung diseases…its time to move the 3rd leading killer up to the forefront. Time is of the essence…help cure these diseases…quickly…I image Nobel prizes…Will be just one of the awards…they still talk of the great people who cured diseases. God speed…in saving, mother’s, father’s, sisters brothers, friends, and children.

      • Christine price says:

        I do not know if you can help or not. I am seeing a lot of people writing on here about the lung institute and their stem cell treatment. From people that have gone this place is a sham just to make money. I would hate for people to give up their savings for these places. My first clue in a place is if they are cash only. It seems to me if they were accredited then they would talke insurance. How can we help people from contacts these places?

        • LuC says:

          Stem cell procedures of any type, even though they have shown tremendous results in the orthopedic fields, lungs, etc… are not approved by the FDA and, therefore, not covered by insurance companies. It is not a matter of accreditation by the Lung Institute or any other stem cell provider. I believe it’s a “follow the money” problem. Orthopedics charge approx. $60,000 for a hip replacement. Stem cell treatment for a hip can run between $4,000 – $8,000 depending on the clinic. If you were an orthopedic, losing even a small percentage of your hip replacement business would cost you a ton. So you’d fight the advancement, wouldn’t you? Same goes for lungs. Big Pharma gets astronomical amounts for drugs like Spiriva and the rest of them. Do they want to give up that revenue? It doesn’t matter if stem cells prove 100% successful, it will take a long time for it to be approved as there is a tremendous amount of money in play here. I personally know multiple people that have had great results with stem cell treatments for different parts of the body and our vet does stem cell treatments on animals with incredible results. Stem cell therapy is the future – we just have to fight hard against the powers that be as they care more about their money than they do the people suffering from these diseases.

  19. Mark Thompson says:

    I have very severe COPD and wonder why a clinical trial is not offered for this. COPD is the 3rd leading cause of death in the US so I feel this should be a priority for stem cell clinical trials. That being said I would be very interested in participating in any stem cell clinical trials for COPD.

  21. Ronald C. MacNeil says:

    I am an active 77 year old male diagnosed with idiopathic pulmonary fibrosis in September 2017. In early July 2017 I was walking approximately one mile with no oxygen and with very little effort. On September 15, 2017 I was not able to was not able to walk short distances with cotinuous flow oxygen set at 8 lpm and was unable to keep my oxygen level above 88. I would be willing to travel anywhere on the east coast to participate in a clinical trial for my condition.

  22. Kenneth Prater says:

    Age 71,Level 4 COPD/AFIB on occasion. I have the PulmonX Zephyr Valve implants 2 ea in ULL. One failed causing pneumothorax which healed and the valve was replaced several weeks later. Continue to work thru Pulmonary rehab. The Medical Group was UC DAVIS Pulmonary Critical Care in Sacramento,California. Attending physician Dr. Brian M. Morrissey,MD and Dr. Ken Y. Yoneda,M.D. Have had communication with Dr. Wei Zuo,Shanghai East Hospital Shanghai,China about stem cell research study.He has asked if I’m ready to come to China. I believe a great deal of discovery and benefit is coming soon with respect to rare ciliated epithelial cells and Lung Stem/Progenitor Cells for the Autologous Lung Stem Cell Transplantation in Patients with ILD. Love to be a part of it. What it does not do for me may surely help someone else. Thats the bottom line. Move to NC,sure why not.
    Sincerely
    Ken Prater

    • Barry McGee says:

      Hi Ken
      My name is Barry McGee and I live in Carmichael,CA. I have been in contact with UNC and they are still going back and forth with the FDA to get their trial approved. I hope the dry companies are not pressuring them to stall or kill it.
      I don’t know how this study compares with the Chinese trial. How did you contact the people in China? I wouldn’t mind seeing Shanghai again.
      Thanks
      Barry

  23. Kenneth Prater says:

    Hello everyone Ken here, I have been told that due to the extent of my lung disease COPD hay LVR and Transplants are not possible. With LVR can they just remove small areas of the diseased lung through bronchoscope procedures in order to better facilitate a healthier portion of the lung to expand and work more proficiently. I understand that removing partitions of the lung that traps co2 air that can not be exhaled could be relieved very slowly like the squeezing of the neck of a inflated ballon with out the risk of pneumothorax and even if it did occur there are powders and sealants that can be used to stop the air leaks. I’m I nuts or just to far advanced in medicine theory. Thank for the responses.
    Ken

    • Mark Thompson says:

      Ken I live in Wisconsin and have seen several doctors on LVR and lung transplants. The LVR can be done when emphysema has created large areas of damage. Then they can take and cut out a portion of the lungs. This then allows the good section of the lung to expand to it’s full potential. With the damaged portion in there air is trapped in the areas with emphysema which creates an over inflation of the lungs. So when you try to breath the good portion cannot expand fully. I was told that the damage to my lungs is kind of spread through out so the LVR is not an option for me. I was told they generally look for large areas of damage in the upper lobes and then remove the upper lobes of the lungs. As far as transplants go I think you would have to be really bad for them not to be able to do one. Of course there are many other things that could prevent it also. When they do the evaluation for a lung transplant they pretty much check every part of your body to make sure all systems are working properly. Your heart, bone density, dental, sinus scan, ct scan, colonoscopy and many other tests. If any of those are not up to par then they probably will not do it. I just talked to woman though that had one done at Jewish Barnes Hospital. Her pulmonary function test before the surgery was 16% of predicted. Her son had to carry her oxygen bottle when she walked so she was pretty bad. However she said they had her do a walk on the treadmill and said she needed to be able to walk for 30 minutes. It did not matter at what speed or how much oxygen she needed just needed to complete the 30 minutes. I don’t know how bad you are but if you are close to what she was or even a little bit worse it still may be possible. I would check with different hospitals that do lung transplants and see. A second opinion is always good. I went to UW Health in Madison WI and was seen by one of there pulmonologists for an initial evaluation. That is when my PFT came back at 16% and they were willing to do the rest of the evaluation so apparently I was not too bad for them to continue. I was reluctant to do it because I don’t like the survival rates and you can’t just get approved for the list and then turn them down if a lung becomes available or they will probably take you off the list. Also once they do the full evaluation they like to put you on the list right away because if you wait they may have to do some of the tests again. My suggestion is that if you are sure you would like to do a transplant then check around and see what different places say. You could even call Jewish Barnes Hospital. That lady that I talked to said she went there because she read that they were one of the best and did a lot of lung transplants. After 6 months she is doing great and her last PFT was 108%. I hope this info helps you and I will keep you in my thoughts and prayers. If you want you can call me 920 527 9496.

      • Penny G says:

        I am part of a trial for Renew lung coils. They are used to effect lung reduction without surgery. They have been a God send for me. I gained 6% FEV1. It has been 4 years and I am beginning to lose ground now but I had such tremendous improvement it was well worth. They are awaiting FDA approval. It is great for those of us not candidates for traditional lung reduction. It took less than an hour and doesn’t require general anesthesia.

    • Sam says:

      You are not too far advanced. For anyone who’s had any biology classes. I have had many. These diseases should have been either more advanced or cured. The ball was dropped due to too many thinking it’s just smokers, now I think they are finally seeing…that’s not it, it doesn’t help, nor does pollution, chemicals…bleach for one. The time has come to move on lung disease and advancements and cures. It seems alot of research (I’m not saying this one), has been repeated and repeated…it’s the plain and simple greed of the pharmaceutical industry that keeps people ill. I think the pharma bro proved that fact. Take good care.

  24. Gary J Foutz says:

    I would like so much to be a study for this. The Dr. at the V.A. Medical Center said I had pulmonary fibrosis. I know we all have to die one day but I was really hoping to at least see my 2 Grand Children be teenagers. I have seen people die with C.O.P.D and it isn’t a present thing to see someone trying to get air to breath. I would appreciate the Opportunity to at least try. Thank You

  25. Kenneth Prater says:

    Mark Thompson, from Ken Prater
    Thanks for the input. I have been shut down by all except Europe for any surgery. My lungs at less than 20%. Probable should not even be able to go shopping,do exercise or anything. But I do a lot including driving, walk a mile a day and lift weights. The risk for me is under sedation my chance of coming off are next to none. That why they can not ventilate me in an emergency. Why directives are if not breathing and no heart rate don’t do anything just leave me alone. If a must be comes up, just make me comfortable until the lights go out, but no heroics of any kind. At this stage I going to move back to Washington to sea level were I can breath much easier for a little longer. We will move in December when the son and wife graduate from the university with their degrees and move on to their Master (PHD). I just want to live lone enough to see them walk down the isle. This is one big reason I would take a chance anywhere to participate in stem cell research. If if works for me great, if not made the next person will have a better chance of success. We all share each other griff with this disease and without each other to lean on all hope could be lost. Love to you all,Live well for today as tomorrow is not here yet and yesterday is gone.
    Kenny P.

    • Mark Thompson says:

      Kenneth when you have a lung transplant done they put you on a heart and lung machine that keeps you alive while they install the new lungs so the risk I don’t think is due to only 20% lung function. As I said that lady I talked to went to Jewish Barnes hospital and her lung function was only 16%. It sounds like you are like me I keep exercising with weights and walking about 5 times a week. I think that keeps us going. If I were you and you seriously want to get this done then call Jewish Barnes Hospital and go get an initial consultation. That lady that I talked to had to have her son carry her oxygen bottle when she walked or went shopping and stuff. If she was that bad you should be alright to have one done. Thoughts and prayers to you.
      Mark

      • Kenneth Prater says:

        Hi Mark
        Yes you are correct, but there in lies the problem. I can not or rather they will not put me on the heart/lung machine or intubate me in any former as I will not be able to recover from it. My age 71 and the destruction in my lungs do not make me a good candidate for transplant or LVR surges. This is a standard in the USA but not in Europe. I can’t fly there/no auto roads for driving there,a boat takes to long and I really just don’t have that kind of money to get there. All I can say for most of us is the FDA needs to get off their butts and start approving new trials and allowing new technology to be used now. It’s not the Pharm. big bros. and profits its our own slow stupidity to get into the thought process of saving lives and or extending them at any cost. For God sakes we are America,we should be leading the parade here not some foreign entity. So my last FEV1 was at 11% not so promising 09/20/2017. Oh I have call Jewish Barnes and they said sorry but it just not going to happen. To many risks for me and they really need those lungs for people who will tolerate the surgery. I also know the lungs transplants are good for about 5 years. Really good to hear back from you. Keep up the great communications as I need it and so do a lot of others.
        Sincerely in Love with LIFE
        Kenny P.

        • Mark Thompson says:

          Kenneth I did not know you were 71 years old. I was told the cut off age was 65 so I can see where your problem lies. I agree the researchers need to get off their butts and do something. We need stem cell trials for COPD. It just seems like they are dragging their feet. I know I have heard the survival rates for lung transplant are not that good. 5 years is a little over 50% and the 10 year is about 33%. However the lady that I talked to had one 7 months ago and said she was on 2 different transplant support groups. She said she heard of a lot of people that live 10, 15 and 20 years. I am looking into it more because I am sick of not being able to do things that I like to do. I still try and do them but have to stop and rest so often it just sucks. I am 59 years old and can’t take care of my wife and daughter. That really weighs on me sometimes but luckily they support and help me. I am blessed to have them and my brother and his family to help out with things, but it still sucks. I will keep you in my thoughts and prayers my friend. If I hear of any new developments I will post them. God bless you my friend I will include you in my prayer group.

  27. Douglas Lowe says:

    Only sixty years old and had to retire from street maintenance job. It has been a year and 3 months but really have to struggle to do anything physical , very short of breath
    Diagnosed with emphysema five years ago, quit smoking soon as I found out, obviously too late.
    I certainly would be grateful to be involved in any experiment that would improve my breathing and get me back to work .

  28. Kenneth Prater says:

    Hi Mark
    I really liked your post. You and I both and I’m sure there are others that are very heavily burden with the fact that they are no longer the leader of the pack and can’t keep up with the same support and protection you did at a much healthier age for your family. Guess what, your family does not expect you to. What they expect is for you to do what ever you have to and never give up the faith and search for some thread and hope for a remission and (ok I’ll go there CURE) for this crap. But in the mean time love your family and friends everyday and tell yourself and believe it just how luck we are to have them at our side to fight along with us. This site has really turned into something great and I hope UNC sees it as a vast resource of very special and resourceful site for any studies they acquire and take the names from this list first as consideration for the trials. Hay UNC are you reading this great stuff? Yes of course you are. Someday Mark it would be nice to sit down with you and your family along with mine and just get a chance to meet such good people. Oh just for giggles, my local bike shop made a carrier for my small D tanks and (crap) special training wheels so I don’t fall over but at least I can still ride my mountain bike on level ground. On a good day and I mean a real good day I can usually get 5-6 miles of riding in. People look,laugh and go good for you. Keep in touch my friend as I would be most interested in what directions you go in and I will share all my research and any new developments from the pulmonary people at UC DAVIS and PulmonX about my progress and new studies with the Zephyr Valve .
    Best Wishes Always
    Ken and Family

    • Mark Thompson says:

      Thanks Ken I do have a great family that supports and helps me. What is this valve that you are talking about. I have heard of valves but didn’t think they had good results. I have heard that LVRC’s (lung volume reduction coils) are presently at the FDA for approval. I read that somewhere but can’t remember where. Have you heard of these? If they get approved they may be a possibility. God bless you and your family.
      Mark

      • Ken Prater says:

        Hi Mark
        You are correct about the lung coils by PneumRx Coils. The valve can be found at PulmonX Zephyr valves out of Redwood City California. When you see the web sit you can see what they are and how they work. They are actually called EBV Endobronchial Valve I have 2 ea. in my upper left lobe of my lung. This site was chosen because it was the most beneficial placement for them. However they did not come without a cost to me physically. One leaked to much air to fast and collapsed my lung. After the drain tubes and the healing process a few weeks we went back in and put the valve back in it’s original location. So far no problems. Yes the valves have worked for me especially at sea level. The valve have also been presented to the FDA for approval. When they get or if they do get approved a lot of the COPD community will benefit from them. They implants took all of about 5-6 mins. to do once all the prep work was done. Would I do more –Oh hell yes in a lung beat. A little pun there. Anyway there was no pain just the crappy numbing stuff prior to the bronchoscope which is how they place them. The study is 5 years long. At any time they can come out, be replaced with new ones or if the study requires additional valves it is done all at no cost to the study patient. If you could find a study and you can qualify, I say go for. If they the coils or valves do get approved, your insurance will not pay for any of it for now. Just a rough guess..5-7 days hospital, surgical staff,study sponsor, and misc. cost about $40,000.00 per implant. Oh, we are moving back to Washington State in May 2018 sea level 0. I have started communication with the University of Washington Pulmonary Critical Care for my follow up and lung care as its going to be hard to come back down to UC DAVIS 1-2 time a year, but if that is what it take ok. I would be very happy to see all my friends at UC DAVIS. I’m waiting to hear about the UNC research and potential approval to do human studies on Stem Cells. Heck I would move to North Carolina just for that. Well good to hear from you. Our thoughts are in our minds and hearts for you all.
        Best Wishes
        Kenny P.

  29. Kenneth Prater says:

    Magdalena Kagel,PHd
    Dear Magdalena
    Can you believe what a response you have generated from the first release of information about the possibilities of getting approval to do a Stem Cell Study Program. Your group has unleashed a huge response to the potential opportunities for so many people desperate for relief and life sustaining treatment. We all hope you get the approval for the study as this is the state of the art treatment potential in the USA. Thank you from all of us and we wish you and your group success as it could mean so much to so many. Love this sites many good people posting and talking.
    Thank you and the UNC for leading the way as you are the ray of hope for millions. (no Pressure there)
    Best Wishes from all who have posted here.
    Kenny Prater

    • Magdalena Kegel, PhD says:

      Hi Kenny,
      I am not involved in this research. I am only a reporter that shared the information with the readers of Lung Disease News, but I am happy that I could share such important news. As we realize the huge interest in the study and the importance of it for patients, we at Lung Disease News are waiting for further information about this trial, which we will make sure to share as soon as it comes along.

      • Kenneth Prater says:

        Thank you for your response. I know a lot of us are looking and waiting to see what happens. Do you have any other news to share with the COPD community about new treatments, studies and any breaking news from the The Lung Disease News. I would like to know how to subscribe to The Lung Disease News,so if you could be so kind as to provide that information it would be appreciated. Is it in a language the lay person can read and understand? A lot of articles are so over the heads of the COPD community that it does not serve as a good source. Again it’s good to see your involvement as we the COPD community need a voice that can reach out along sides our own asking questions and seeking answers to how do we continue to struggle with so little hope as the FDA and other government agency stagger and drag their feet. We really need help and if we could only combine the talents in the USA with those abroad and bring this under a single roof for development and human clinical trials, I believe that the Stem Cell studies would progress so much faster as would the attempts to induce the results into life changing treatment and medications we are all waiting for today.
        Sincerely
        Kenny P.

  30. a says:

    Magdalena, I sorry but the answer to my request for the address is in the very beginning . I think that everyone on this post should sign up as it has a ton of really good stuff for the COPD community and for all of you in rehab…ask questions and share with the others as there is a great wealth of information there. We are here to seek life, not the end so get all your questions answered and go to as many resources you can, Just don’t quit, it is hard but believe in yourself and your family and friends. They are there for you and you are there for you.
    Kenny P.

  32. Ken Prater says:

    Dear T.D. Tucker
    I don’t believe anyone has suggested or related to going to the Lung Institute,so I don’t understand your comment on do some honest research. Perhaps I’m just not understanding your statement or is this just good general advice for all readers.
    Thank
    Ken

    • Mark Thompson says:

      Ken,
      I researched that facility and they have a lot of videos of patient testimonials that sound good. My thought was I wonder how scripted the interviews are, so I am skeptical of them. I have also seen negative reports about them online. I just did some research on another company that is doing basically the same stem cell therapy as the Lung Institute. This one is called StemGenex. They all do pretty much the same thing. They can take stem cells from your bone marrow, from a birth mothers placenta or from your fat tissue. The bone marrow and fat tissue are preferable because no chance of rejection. When using the fat tissue I think they are called Adipose stem cells and they usually use this because stem cells are much more plentiful here than in the bone marrow. After they do the mini lipo suction the dormant stem cells are isolated from the fat and then reintroduced to the patient through and IV or for COPD they do a second treatment with the stem cells in a nebulized solution. So far StemGenex is the only one that I have found that has a clinical trial registered with the (NIH) US National Library of Medicine. I think they started in 2015 and will be done in February of 2018 and results to be posted shortly there after. I think there were 75 participants that paid for their own treatment. The procedure is $13,500.00 and they are located in La Jolla CA. Of course this procedure is not covered by any insurance but if it proves to be a success it would be worth the money. I can’t wait to see the results. Here is a link for the clincal trial and their website in case anyone wants to keep track of what is going on with the trial. https://stemgenex.com/ https://clinicaltrials.gov/ct2/show/NCT02348060?term=stemgenex&rank=4

      Just offering info so you can make your own informed decision. Hopefully by the end of February they will have the results posted and we can all see how well it works. Prayers for good results so that many people that suffer from this can be helped.
      God bless.
      Mark

      • Ken Prater says:

        Hi Mark
        Please beware of any clinical trial that asked for you to pay for it. Its not real. There are several clinical trial on the clinical trial.gov site but they are not all approved by anyone. Anyone can post to the web site, it the patient that has to be very careful and alert to these artist, even the ones over seas. The problem with these stem cell is it takes a huge amount and they do not live for very long that being the reason for the repeated treatments. Oh YA the extra treatment you will pay for those as well. Check with the FDA for approval. Ask for their published papers on their studies.
        Thank Ken

  33. Gary J Foutz says:

    The Lung Institute told me they do not except medicare or the V.A.They told me also I should get a fund together on the internet to pay for the treatment. I told them I was not going to have anyone giving me money to pay my bills. So what I got out of that was hell with Vets and People on Medicare just people who has money is the one’s who benefit.

    • Mark Thompson says:

      Gary the treatment is not an approved FDA procedure so no insurance companies will cover it. There are no stem cell therapies out there for COPD that are approved by the FDA and all of the places that offer them have the same payment policies. The only thing you could check into is some of them take Care Credit and may have special financing for a certain amount of time. I don’t think it has anything to do with Vets or Medicare it is just not a procedure that is covered by any type of insurance. Also that is true if you don’t have the money or don’t want to get any funding then your out of luck. We do have one here in Appleton Wisconsin that will take you if you are indigent but the waiting list is about 2 years. Here is the link to that one if you are interested. http://www.optimalhealthstemcell.com/
      Good luck. Thoughts and prayers for you.
      Mark

  34. Ken Prater says:

    Anyone that is looking into stem cell therapy….Please be very careful as most will rip you off knowing just how desperate you are to breath and live. Stay away from these NONE FDA approved (Puppy Mills for adults) clinics. If you are serious keep informed with the links and leads provided on this web page posted by Magdalena Kegel Phd. stay in touch with all the teaching universities and those that are in request for funding for clinical trial thru the us govt.Keep bugging them as you have nothing to lose but everything to gain. The clinical trial are FREE FREE FREE and cost you NOTHING if you can get into one. Most are several years of follow up and all follow up care and emergency care related to the study are FREE. Please for Gods sake don’t let these worms get into your pockets. If it sounds to good its BS>>>>>. Sign up for the Lung Disease News. Im very desperate for breathing and life but I refuse to jump in bed with any of these morons either here in the USA or even any over seas advertisers. Been there and done that off the references from the govt. clinical trials.. Keep up your post and someday one of us is going to hit the jack pot for everyone in the COPD Community.
    Love you all
    Kenny P.

    • Mark Thompson says:

      I can’t find any clinical trials using stem cells for COPD therapy. I find plenty for different medications for COPD. These research companies only want to satisfy the Big Pharm. The only one that I saw starting a clinical trial from a research company is the one in North Carolina and that is for pulmonary fibrosis only and not COPD. If anyone knows of any companies or Universities doing research on stem cell therapy for COPD please let me know as I will contact them about getting clinical trials going. Thanks.
      Mark

      • Ken Prater says:

        Mark, go to the very top of this page and you will see that the University of North Carolina is ,has approached the FDA for approval to do Stem Cell Studies Clinically. That are awaiting the response to their request. Please start at the top of this page and read ( North Carolina Advances in Stem Cell Therapy Lung Diseases could lead to clinical trials Soon) Clinical Trials discussing the start of clinical trials with regulatory authorities has been confronted. The study for Pulmonary Fibrosis, COPD and Cystic Fibrosis. Also read the post by: Magdalena Kegel,Phd- Aug.29,2017 at the upper portion of this page. This should give you an indication as to whats up and they will let everyone know if and when it is a reality or not at NCU. Mark you have already made a very important contact by just posting to this page. You can always contact Magdalena but remember she is not involved directly with the study, she is a reporter for the Lung Diseases News. Thats another reason to sign up with them for any local or national news on Clinical Studies any where in the US. If it goes down she will be hot to post for all.
        Bless the COPD Community and the professionals that are trying like hell to save our lives or give us a better quality of life. Once I figure how to put it in words on my next post,I like to address the Government,The President,the Statement and Stateswomen, Governors,The Medical Board,The FDA and reach out to them to see what they can do and how much clout they have to bring our country and foreign countries under the same umbrella for research and development to attack this Disease. This is a responsibility all of share and should participate in with each other, our families and with all our hearts.
        Love to you all
        Kenny P.

        • Mark Thompson says:

          Ken,
          I emailed the director of that study his name is Jason Lobo and they are not doing anything with COPD. His expertise is in the Pulmonary fibrosis area so they will only be taking patients with that lung disease. I asked if he knew any places doing research similar to his for COPD and he said none that he knew of. So that one is a dead end for COPD candidates. Hopefully results from that will show benefits and then maybe they can also adapt it for COPD.
          Mark

          • Ken Prater says:

            Hi Mark
            Yes I agree with his statement so as far as I see it Im going to place my life bets on these type of researches and institutions that are credible and have FDA approval or try to see what on the other side of the world that is for real and see how to get there. I still feel its going to happen here, maybe just not for some of us. Got keep the faith.
            Kenny P.

          • Mark Thompson says:

            Ken, I praise the Lord every day and thank him for the strength and perseverance. I also pray for healing everyday for me, you and many other people I know that are having health problems. God bless you.
            Thoughts and prayers.
            Mark

      • David Karagosian says:

        Ken
        In Tampa Florida they have the Lung Institute cost for 2 times 9k.
        or bone marrow that is much money Maybe they have lung institute in your area.
        Some good reviews and some bad.

  36. Nancy Butler says:

    I am 68 years young and discovered two years ago I have COPD. I had to have a 7 disk fusion and a lamenectomy. Due to my age I had to have preliminary testing to determine if I was a surgical candidate which is when the COPS was discovered. I was classified moderate risk at that time. Since I have experienced a rapid deterioration in my abilities to do simple tasks such as carrying groceries, walking any distances. Any activities seem to elevate my heart rate and create shortness of breath. My family doctor has me on Breo but that is it for now. I did end up with pneumonia last year and was on oxygen for a short time but was discontinued. Since then my condition has worsened however I have been silent about it so as not to worry my family. I blame my current limitations on the pain I experience since back surgery. I secretly monitor my pulse/ox and try to exercise my lungs as much as possible and of course read everything I can so I can understand what I am experiencing and what to expect. I thank you all so much for sharing your stories and information as it helps me to feel less alone as I gave my eventual demise. God bless all of you.

  37. Annette Lacey says:

    I would love to be put on the list for whatever I have copd and would love to get a transplant or cell stems or what ever to help me I hate the feeling I get of suficating it’s horrible I’m on oxygen 24/7 and hate that to so please put me on all the list avaliabe

    • Mark Thompson says:

      Annette I agree I hate that feeling too. I was always very active building something either a radio controlled airplane or something around the house but since having to retire in June of 2015 doing that stuff really is hard. If I do decide to work on things it takes me 10 times longer to do them with many stops to catch my breath. I still do those things because I am not giving up those things that I enjoy. I usually don’t use my oxygen when doing work because it gets in the way and makes me more short of breath because I have to carry the oxygen around. So, I go without and stop and rest often. For you concerning lung transplant and stem cell therapy, I have found no clinical trials with stem cells for COPD. There is the one in South Carolina that will be starting soon but I contacted the director of that project and they are only doing things with Pulmonary Fibrosis because he has no experience with COPD. As for lung transplants if you are interested in one you need to contact a hospital near you that does lung transplants. There are no clinical trials for that as it has been a proven and FDA approved procedure. After you contact a hospital that does them, they will do an extensive health evaluation to see if you qualify to be put on the transplant list. I think there is a cut off age of 65. Once you are on the list they decide who gets the next set of lungs based on who is in the most need not who was on the list first. So if you are interested in getting a lung transplant do a search on the internet for places near you that do lung transplants and then get an appointment for an initial evaluation. They will then go over the procedure and answer questions before doing the extensive evaluation. I know Jewish Barnes Hospital does a lot of lung transplants and are very good. Where ever you plan on having it done plan on being close to the for 3 months after the surgery so they can monitor you and get your medications adjusted. I hope this helps a little.
      Mark

        • jeanette Atwell says:

          Hello Mr. Foutz,
          I am very anxious to find a stem cell clinical study as I cannot afford the approximate $14,000 mol from the Lung Institute
          Sincerely,
          Jeanette Atwell- COPD sufferer

      • Mark Thompson says:

        Oops, I meant that North Carolina’s trials that will start soon and are only for Pulminary Fibrosis and will not take applicants for COPD. Dr Jason Lobo is the director and his specialty is in fibrosis and not COPD that is why he is only having trials for Pulmonary Fibrosis. I wish someone would start clinical trials for COPD. What the heck are they waiting for?
        Mark

          • Mark Thompson says:

            Barb I don’t know what is going on with the medical community. COPD should be on top of the list for clinical trials in my opinion, but I never see any for that. That one in North Carolina is for Pulmonary Fibrosis because the doctor that is running the clinical trial has only done research on the fibrosis and does not know a lot about the COPD. I did some research and found one of the people on the research team is Dr. Jason Lobo. I emailed him and he is the one that told me his specialty was in the fibrosis area and that is why the trial will be geared towards the fibrosis. If you want to contact him I went from info in this article and then contacted the hospital to get the email address and then emailed him. http://lungdiseasenews.com/2017/08/22/north-carolina-team-says-clinical-trial-of-stem-cell-therapy-for-lung-disease-could-come-soon/ If you are interested in the fibrosis aspect then try and contact either of the 2 doctors mentioned in this article and see if they can help you. I know it is very frustrating that we never hear of any clinical trials for anything dealing with COPD. Big Pharm probably has their hands in stopping that some how because all they care about is the billions of dollars they are making off the medications. Thoughts and prayers.
            Mark

  38. Colleen Runge says:

    I am so amazed and grateful for the technology that allows people like me to experience a better quality of life. I don’t know if this is the place to request to be in the clinical trials, but I would be very grateful and willing to be a part of it. If this is not the place for it, I would be very appreciative if you could direct me to where I should apply. Thank you so much.

    • Magdalena Kegel, PhD says:

      Hi Peter,
      The trial has not yet started and I currently have no more information. I am only a reporter writing about it. We will report any new information as it becomes available.

  42. Ken Prater says:

    Hello everyone from Kenny P. Happy Holiday. We just put another happy holiday with friends and family behind us. Did you you think you would make it this year? Well weeks and months go by and new holidays come and pass faster that we can remember but we make them and we are still here. Good job and congrats to you. I hope you all see many more and Im sure you will. Keep the faith, keep strong and keep your loved ones close at heart and you shall succeed. Keep looking for answers and nerve NEVER give up. Remember cures are always just around the next corner and ours is coming. God bless you all on this Thankful day to just still be here.
    Love you all
    Kenny Prater

    • Mark Thompson says:

      Ken,
      Happy Thanks giving to you. You are right, never give up. I made it through another one also. It is great to have family and friends that are here to help me with things that I can’t do anymore. God bless all of you out there with COPD. I say a prayer for all of us everyday.
      Mark

  43. Lucy Tanner says:

    WILL TRAVEL FOR CLINICAL TRIAL i HAVE COPD . I HAVE REAL HIGH HOPES FOR THE THERAPEUTIC LUNG SPHEROID CELLS.LIKE EVERYONE I WANT A CURE. i DON’T WANT TO DIE.I WANT TO THANK ALL OF YOU FOR ALL OF YOUR WORK TRYING TO FIND A CURE.

  44. Ken Prater says:

    Hi everyone from Kenny P.
    I know there are a lot of us that are not doing well with our cops,but we can’t just wait for someone else to do it for us. Stem Cell treatment is not the 20 years away as many have thought, but remember it is not a cure.At least not yet and bad news is most likely not in many of of our lives. What we can do is help the medical industries and the investigators of new medicine treatment develop by using us to advance treatment for the ones down the road. This is how we will live on and longer and this will be our legacy to mankind. Everyday try to stretch your selfs to your limit and go on from there to the days. Our medical industry is very out dated and behind and our doctors used to current even 4 years ago but today its not even 2 years at best and their teaching and the books they used are outdated. Our pulmonary arena is so short of trained staff and they cannot keep up the patient load. I would venture a good guess that 1/2 million people we first learn of the disease and how it affects them in the next 1 to 5 years or sooner. Who going to take care of them and how are they ever going to be able to treat them any better than now if America does not come together with the rest of the world for research and development of new treatment and medications. You keep talking about big phams. but how the predators who make the smoking materials. How about they contribute 75% of their earning to research. They would still be making millions after that contribution. It should be made into a medical reimbursement law to the many they have stricken down with their products. Rants done and Im tired. Good night and lots of love to all.
    Kenny P.

    • Mark Thompson says:

      Ken,
      All the industries that produce chemicals like bleach, ammonia, acetone and things like that should help pay for research also. I have read that a 30 year study on people exposed to cleaning agents like ammonia, resulted in a significant number of people having COPD. All of those companies should be shelling out money for the research. As far as the medical part of it, the research facilities need to start more extensive testing on stem cells and they need to get some clinical trials going. I know they would have plenty of volunteers.
      Mark

  45. Claude Allien says:

    I live in Haiti.My wife has been diagnosed with COPD.We have to travel to Miami to see a Physician twice a year for regular check up and whenever she has an exacerbation.We would be interested in participating in such a trial study.Please let us know how do you contact the researchers for possible clinical trial subject?

  48. rita rigby says:

    I have obliterative bronchiolitis that is steadly going worse is it possible to apply for clinical trials I live in the UK but would
    gladly travel to US if this was possible. Could I hope you may consider my case.
    Kind regards
    Rita Rigby

  49. Kathy I says:

    My husband was diagnosed in July, 2015 with ILD He was on a ventilator for 35 days with no hope of surviving. With some miracle he pulled out of it. Has permanent scarring on the lungs. Was on a lung transplant list was removed due to his lung capacity improving to 79% from 54%. About 10 months ago the dr lowered his steroid to 5 mg a once a week, Since that he started to get worse again Now he is on 20 mg of steroids a day. Is a little better but not back to where he was. He has put on weight from the high steroids which also affects his breathing. He is only 51 and rather healthy besides the lungs. No other health issues. We are scheduled for a lung transplant eval in Feb. Very interested in an eval for this clinical trial.

    • Mark Thompson says:

      Kathy 54% lung capacity would be a whole new lease on life for me I was at 11% in August of 2016 and then got back up to about 16% from exercising. I had a bad respiratory flu last May so I think right now I am some where between the 11% and the 16%. I still am afraid of the lung transplant though. The survival rates are not very reassuring.
      Mark

  50. Ken Prater says:

    Hello everyone
    Hope you all had a good Holiday with family and friends. We are now moving to another year of challenges and expectations of help with our breathing from our medical experts. I gotta tell ya that waiting is not going to cut it. You have to go get it and unfortunately its not going to easy and you will feel all alone. I scared, your scared so what do we do??? Me, Im going after all the resources that are here and out of this country. Im going after over 6000 years of Medicinal Medicine that really has not been tapped into yet,not to its depth that is required for slowing down this diease. Next week I plan to experience as many TCM Doctors that I need until I find the right Doctor,right Herbal combination of MEDICINES and the right acupuncture procedures that make a difference to me. Im going to pull out all the stops. I know a lot of you are not sure about this, but I’ll bet the results will be different. Not being afraid to die ,but afraid to live is the challenge now of how far and what are you going to be willing to try is NOT being afraid to challenge yourself to live and hold the cards we have been dealt in order to get a better hand NOT! throw them away and draw again and again until you get the right hand. Well Happy New Year and love to you all. Its your life, you go and find the help that you need, because it won’t be in a box under the bed. Let me know how you are doing and I’ll share my experiences with you.
    Kenny P.

    • John Lee says:

      Very good for you to be positive about your difficulty!
      My wife’s illness was diagnosed first as IPF in NJ. For a second opinion, we went to U of Pittsburgh, an IPF center and got “Bronchiectasis” diagnosis. Now so far, it remains as “non-CF (cystic fibrosis) Bronchiectasis.
      We have tried Dr Gundry’s and Dr Sears’ natural supplements, but due to rough constipation, we stopped all natural supplements. We hope to see something good from the Jan 11, 2018, FDA review of “Linhaliq” and U of North Carolina Health Care’s Stem Cell treatment approach in the days to come.
      My wife’s biggest problem has been the loss of appetite, losing weight, though very slightly each month. She has been sick at least for two years. Her main medicines have been prednisone (2mg a day), nebulizer (albuterol sulfate), oxygen(2.5 liters) supply and recently Afflo Vest. Best regards and more power to your journey.

      • Ken Prater says:

        Hi John Lee
        I hope your wife will find relief along her road. Her meds to me are ultra low dose compared to what junk I take daily. I hope the U of North Carolina comes up with the go ahead on the research study. For me That is not going to help me but more than likely will help a lot more. Lets hope if it is she on the number 1 spot for the study. You guys have a great New Year. Take her out more often for ice cream Sundays and don’t let her give up and as always remember even when your down be up for her..I may not be there in person but you will still feel my hope and my Karma.
        Sincerely
        Ken

    • Mark Thompson says:

      Ken I am considering going to get evaluated to get a lung transplant. I know that they told you that you can’t have one but if you could would you do it. I am concerned about the survival rates but have talked to a lady that had one 9 months ago and she said she wished she would have done it before she did. She is doing so well her lung function is up to 118% from 16%. Just asking your opinion if you could get the transplant would you do it?
      Mark

      • Ken Prater says:

        Happy New Mark, real good to hear from you, it been awhile. You know for me its not a option any longer so hell yes I would. But that is the desperation of wanting to breath and live speaking out. So to the real question at hand.. Lots of money..Last for a good 5 years or more then needed to redone if possible. Your 59 young. I would really consider it a good choice. There are stories of people going 10-25 years on a single lung/bilateral transplant. I think the odds are as good as any now days. If you can get on the waiting list…Pass all the frigging test…Find the very best pulmonary hospital and doctor then sign you and me up. I would chance death to get a better chance of an extra 5-10 years. This is what I mean when I say get out there and find your own cure. You go for in Mark and if Im wrong at least you tried and so would I. Your still your and you have a great family backing you up and with a little helping hand of the almighty thing could go very well. But with that being said you need to make your own decision and not allow anyone or one thing talk you out of it unless it is medically to risky for the benefit. God just think about no tanks, no 02 lines and no breathing meds. But don’t forget that you will be on some serious meds for a while that you may not like but are you liking the way it is now. You go for it brother and keep in touch through the whole process.
        Kenny p.

        • Ken Prater says:

          Hi Mark,whats up beside a chicken butt when it gets. How it going on you lung implant search. I see a lot of new post and it looks like there are a bunch of new issues with many different people all looking for a cure. The TCFM medicines I was looking into has turned out to good and real bad. Not TCM doctors want to be involved with certain medicinal herbs due to our stupid government and all the red tape crap they put out there. Im sure they know more than over 2000 years of traditional herbal medicines in TCM. The other thing is the fear that the FDA and the government has has forced upon them and their licenses and practices. The big dollars are stopping a lot of people like me from the ability to pay as insurance does not pay for TCM medicines and the requirements for TCM doctors re they way you to become a patient and participate in the programs from medicine.rehab,accupuncture all at a cost of 2-3 sessions per week for $125.00 per session or so. Good God people are we are doing is trying to live a little longer and obtain a little better quality of life with family and friends. Ok my RANT is done. Does anyone have anything good to share. Im sorry I ran out but I know someone has some good news about themselves and family that did not cost and angry or hurt from being rejected or told nope nothing can be done for now so learn to live with.
          I really hate to post like this,SO—- it will probably be for sure my last. Love you all and wish you the very best. Kenny P.

          • Mark Thompson says:

            Kenny,
            The wife and I talked and I have started the process of getting evaluated for a lung transplant. I have contacted the coordinator and am waiting for them to call and schedule my PFT and a meeting with doctors and financial consultant. I have talked to about 10 different people online and here is Oshkosh that have had lung transplants and all are doing well. A couple had some complications at first but are doing well now. They range from 1.5 years post transplant to 8 years. So I am feeling more positive about going through it. All the nationally posted survival rates are pretty scary but in my condition if I get pneumonia I may not recover, so that in itself is scary. After talking to everyone they said everyone they have ever talked to about lung transplants said they wish they would have done it sooner. So that has been reassuring to me. Besides you will live as long as God has planned for you no matter what. It’s all is his hands. I did run into a friend that has a book on some different breathing technique that some people with COPD claim has helped them a lot. I am going to check that out. If it seems to work at all I will let you know. Hang in there my friend. I know it sucks having this. It also sucks that any news you hear is about Pulmonary Fibrosis and nothing on COPD. What the heck why don’t they do more research and testing on that. I am frustrated just as you are. I will keep you posted on my situation. Your in my thoughts and prayers my friend.
            Mark

          • Mark Thompson says:

            Kenny the about 3 weeks ago the wife and I went to UW Madison to start the process of getting evaluated for a lung transplant. They did a PFT and my FEV1 is about 15% so I am really low. However I do not need oxygen when at rest only when up and doing things so for this reason they did not want to evaluate me yet. They said they could evaluate me but because I didn’t need oxygen at rest I would be very low on the lung allocation list. He wants me to do a Pulmonary Rehab course and see him again in June. I told him I have been through one of those courses and have continued to exercise using their guidelines for heart rate and O2 saturation. He still wanted me to go through it, I think just so they could document it and document my vitals while I exercise. So I guess it is not in the good Lord’s plan for me to get a lung transplant yet. I guess I just keep plugging away. How is your battle going?

    • Magdalena Kegel, PhD says:

      Hi Steven,
      As of yet, there is no list. The trial has not yet started. We will cover any progress on this topic, so please sign up for our newsletter to make sure you receive future information about this study.

  53. JD Jackson says:

    I am extremely interested and want to participate in a legitimate COPD research program using stem cells.

    I have been diagnosed with moderate to severe COPD. My current prescription regiment is 1.25mg / 3mL Levalbuterol nebulizer 3 times per day, Symbicort 160/4.5 two puffs twice per day, and Spiriva 18mg capsule for inhalation once per day.

  54. Lynn. R. Cox says:

    I have coal miner’s black lung. I have no lung doctor..the VA supplies my O2 which i’m on 7 lph continuous.I’ve contacted a clinic in Franklin TN who wants 8 thousand dollars cash up front.I need a trial to get a few more years to see my grand baby graduate high school

  55. John Hester says:

    Hello,

    My mom was just diagnosed with IPF yesterday. I would greatly appreciate if you could let me know if and when you are looking for volunteers for your study.

    She’s a retired critical care nurse and has never smoked, exercised several times a week for decades and has always been very careful about what she eats. Until a few months ago she has always been very healthy but now she gets out of breath just walking up steps.

    I live in NC and would very much like to learn more about this study. Thank you in advance for what you are doing.

    • Magdalena Kegel, PhD says:

      Hi John,
      I’m sorry to hear about your mother.

      We at Lung Disease News only report about the research, we are not involved in the study. At the moment, there is no information on who will be eligible for participation since the researchers are still discussing with regulatory authorities. Once that information becomes available, we will report it.

      Please sign up for our newsletter to make sure not to miss this info.

      • John Knowles says:

        Hello Ms. Kegel – – I currently have late stage copd and would appreciate any information you can give me about stem cell or other advanced experimental lung therapies. I understand some researchers have had some interesting results wtih inhaled nebulized all trans retinoic acid.
        Yours truly,
        John

  56. Michael barnes says:

    My name is Mike Barnes and I smoked for 50 years. I started in the army in 1966.I have had copd for 10 years and would do anything to improve my condition.I would love to be in any trail you may be having. I LIVE IN Claremont California but could come out there at anytime and put myself up for as long as necessary. Please consider me for your study. Thanks

  57. James Mitchell says:

    Recently Dx with Pulmonary fibrosis, Jan. 2018. In 1956 I was in the Atomic Bomb test & flew via US Navy (unprotected) into x10 radio active clouds. I am convinced my lungs were damaged.
    Please add me to your clinical trail participants for stem cell therapy for IPF.

  58. Ann Clark Densmore says:

    I would be so grateful to be a part of a clinical trial for stem cell research for COPD. I am an Aspiration pneumonia survivor after 3 weeks on life support in ICU following surgery (2006). I am a lung cancer survivor (twice); in the upper lobe which was stage IIIB and the lower lobe both in the right lung. The entire upper lobe was surgically removed and was followed by a complete course of chemotherapy and 35 radiation treatments (2009). Two years later in 2011, a smaller cancer was diagnosed in the lower lobe. There was some reluctance by the first treaters to risk further treatment beyond more chemo because of some enlarged lymph nodes in the bronchial tubes. I sought second opinion from the University of Michigan. Nine biopsies were taken and all nine were negative. Five gamma knife radiation treatments were administered at U of M. Semi annual and annual follow up CT scans have been on going since 2011, and I was officially declared a survivor in 2017. But, of course, I have had chronic bronchitis for years and am now treating for COPD with the use of a nebulizer several times a day, oxygen as needed with exertion, a rescue inhaler, and another inhaled medication. Exercise is a regular part of my day. I am 79 years old, am independent, live alone and maintain my own home. My maternal and paternal genes are very strong and I am blessed with a history of longevity. I hope to still be living well into my late 90’s as my mother and her two sisters achieved. In a matter of just 3 years I was very ill with 2 major lung diseases, and have been cured on two of those with God’s blessing and the advances in medicine. But now I have the third lung disease, COPD, which begs for a cure for thousands. I want to be a part, in my own small way, in helping work toward that cure.

    I have unfinished work to be done, and I want the opportunity to do so for as many years as I can with reasonably good health. To that end, I will do what ever I can to help in curbing, reversing, and hopefully in finding a cure for the disease (COPD). To that end, I am very happy and hopeful to be invited to volunteer for the opportunity to participate in the stem cell research going on at UNC in North Carolina and any clinical trials related to COPD, Emphysema, Bronchitis, or lung Cancer. Thank you for your consideration.

  59. Christopher James says:

    My name is Christopher James .
    I am a disabled NYC-FDNY firefighter . Rescuer/survivor
    Of the terrosit attack on the WTC on 9/11 2001
    As well as a first responder to the airline tragedy flight 587.
    The 757 airbus that crashed into rockaway beach on the same year .
    I have been diagnosed with pulmonary fibrosis and been told that my only option for survival in the near future will be a lung transplant .
    I am 45 yrs old -Non~smoker – and despite debilitating my lung illness caused by my service and sacrifice at the aforementioned events , I am in good health.
    I would be very interested in contacting the researchers and participating in any clinical trials being done in the field of stem cell therapy for the treatment of lung diseases.
    How can I contact the researchers involved? I believe I would be an ideal candidate for this experimental treatment.

    • Robert Hemberger says:

      I was diagnosed with idiopathic pulmonary fibrosis at Mayo Clinic in Jacksonville in 2015. There has been gradual decline in my lung function since. I now need oxygen 24/7, but it is still difficult to breathe at times. A lung transplant has been ruled out by a competent team. I would like to be considered for participation in clinical trials with this promising stem cell therapy. In addition to myself as a donor, two of my brothers (one with the same blood type) have offered to be cell donors. I am grateful for your consideration to be a participant in the near future.

      • Mark Thompson says:

        Robert why did they rule out a lung transplant? I went 3 weeks ago to get evaluated to get put on the lung transplant list because I have very severe emphysema and after the pulmonary function test found out my FEV1 is about 15%. I have been exercising 4 to 5 days a week with this level of FEV1 since July of 2016. It sucks trying to do the exercise but I think because of it I do not need oxygen at rest. For this reason they won’t evaluate me because I would be so low on the list. From research I have done I have determined that not all transplant facilities have the same criteria for being put on the list. Unless you have some underlying medical condition you should be able to find some place that would do it. Search around and get a few opinions. Good luck my thoughts and prayers are with you.

  61. Mike Heffernan says:

    my father will be 80 in July and would be a willing participant in your studies he is on oxygen and runs at about 6 to 8 litres contact me if possible

  65. Paul Blair says:

    There is a stem cell therapy clinic in Appleton, WI. Please watch the video by Dr Mike Johnson at http://www.ohlungsuccess.com

    I was impressed enough to consider traveling there to get the treatment for myself. It IS expensive but for people who have been given a finite time to live, what do they have to loose? I’d be interested in hearing from anyone who has seen Dr Johnson and can report any results.

  66. James Marino says:

    I am 71yr old male with emphysema. Diagnosed 10yrs ago.Gave up playing basketball last year.I still bowl 4 times a week.I would be a willing participant. I would like to know if I qualify for this program.

  67. Cheri Sansom says:

    I am trying to find a clinical research program for stem cell treatments for Abestos of the lung for my mother, She is 74 and is on oxygen for good, The dr said she needs stem cell treatment but insurance will not cover it and it is $14,000 just to start treatment, She lives in Tampa, fla but is willing to travel any where to get in a program.

  69. David Karagosian says:

    I am a 70 year old Disabled Veteran.
    I did not start smoking till I was 28 when there was nothing for me to do but forced retirement.
    My quality f life has gone down hill I am on oxygen for COPD and Emphysema.
    I miss going out and miss many things with my nieces and nephews and great nieces and nephews.
    I have not seen them in a long time I just do not want them to see me like this.
    There is a place here in Florida called the lung institute but the VA will not cover it.
    I am pleading for help.

  70. STEVEN HENNING says:

    still waiting and watching the progression of this monster in my lungs…i can be there in under 8 hours and don’t mind paying…copd is still a death wish…help

  71. CW says:

    This research sounds very similar to the Clinical Study that was being done in China on IPF patients.

    clinicaltrials.gov/ct2/show/study/NCT02745184

    Hopefully if they are competing against one another over a similar approach that means there may be something significant to this stem cell approach. Hoping for a cure or at least something to significantly slow the disease progression. Ofev isn’t doing much for me.

  72. Bristol H. C. says:

    About Ten years ago, My Cousin, Dr. T. Allison survived a boat mishap and got drown in the water but was found by rescue party been drifted in the middle of the flowing river. It took hours to revived him back to life,with medical assistance. That was our Joy by God Grace. But four years later he started suffering unnoticed gradual breathing problem, and two years ago was diagnosed of having lung Fibrosis disease and was on that medication, and was been treated in Scynail Hospital, India. Last year his lung could no longer sustain his required air intake, such that currently is on 24/7 direct oxygen use. Then last year, we read so many online articles about Mesenchymal Stem Cells for pulmonary lung Fibrosis / California’s… and also Stem Cell Cure PVT, New Delhi, India of which many online claimers haven effectively developed clinical trial for Treatment of Bronchial Fibrosis and COPD or otherwise in their various Countries of aboard. Contacts were made with them , for the India Hospital they claim to come to the patient’s country or city of aboard for the Stem Cell Cure plantation Treatments. How can my reader believe that after haven paid over $10,000 USD initial mobilization in their U.S Base bank Account this experts failed to arrange their coming for the treatment for the first initial dose operation. Please can we believe this is not the Scam in U.S.A your referred. Yes it may be. What do we do in this case now. If the only viable place is Carolina, U.S.A and over two years the Clinical trial is awaited to alleviate the several feeling of online patients who are bored, volunteering and eager to be in; why the delay then? Please Magdalena Kegel, PHD I hope there will be no Scam in this too. Will the trial patients be only from U.S.A ? Otherwise let him be included. Thanks From H. BRISTOL.

    • Jose Pardo says:

      My wife has been diagnosed with IPF and have been searching for stem cell therapy all over. What really gets me, it is the many promising studies from various universities and hospitals. Two or three years go by and nothing is heard of again. What’s happening ? Is the FDA or big farma delaying the process of certification while people cling to dear life ?

  73. Anna says:

    sorry everyone – I have COPD too – but why do people think that saying they want to be in a trial – in a COMMENTS section – is going to get them anywhere at all! Please use your brains. You apply for clinical trials through consultant or searching the clinical trials website and seeing if you fulfil the many criteria first. And. before you ask the obvious try Googling – Clinical trials

  76. Lynda says:

    Hi I’m from Australia, Adult onset asthma with a big M.A.C disease (macrobioyic Avium Intercellular Complex) from a spa now cured but left lungs scarred, followed by a life long no cure arse brochectisis……33% lung……kinda feel like a fish out of water………..thats all

    PEEPLES….DON’T GET IN A SPA if your immunity is low from chronic illness or you take steroids long term. It causes a horrible diease called MAC as above…good health to all 💜

  77. Peggy D Rogers says:

    Everyone,
    It’s been 3years & no clinical trials! It’s the federal drug association. UNC has to get approval from them for the clinical trials. It’s sad but China has clinical trials which started 2016 & ends 2020 with these lung stem cells! We will die waiting on this miraculous therapy due to the FDA rules! We need to march together at the white house protesting the FDA! Trump will light fire under them!FDA labelled stem cells as a drug! Big Pharma pushed FDA into labelling it that way. So that they could get their hands on it ! It’s all about money!Big pharmaceutical companies are now playing God with stem cells!Ive had stem cells for the past 4years. My stem cell physician told me all of this 3years ago. He & others were involved in fighting against the FDA & big pharmaceutical! But unfortunately they didn’t have power & money to fight them. Anyone interested in protesting at the white house, contact me @ (770)632-4447……

  78. Ed says:

    i skipped clinical trials.gov and directly called all the specialist hospitals in my state, cedars, san francisco, ucla, uc davis,etc..they all have trials going right now!..,my father found out today that his defusion is at only 14%,…so now im saying the hell with it all and heading to Mexico ,or have mexico come to me!.. they have a bunch of clinics out there,in tijuana,mexicali,mexico city, etc that do stem cell therapy!..GioStar also looks like a good one in san diego,hes an indian dr. who is also using stem cell for sickocell patients curing them in india…also if you go to clinikintegral.com/mx ,..you can call and speak with a dr.,..you will find out that they even come to the states with stem cells ready to go to treat people and they charge really cheap,im talking like $500 on up,they come every month to help patients who need help,…this is what its come to and when there is nothing else,extreme times call for extreme measures,you gotta do what you gotta do and say fuck the government!

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