Cure TBM (Tracheo-Broncho-Malacia Airway Foundation TBMAF)

I’m 67 years old. Since I was in my late teens I began having slight respiratory issues. Throughout the years following , I was diagnosed with Asthma and , chronic bronchitis ,sleep apnea, COPD, then came a kidney disease diagnosis along with a Hiatal hernia, SVT’s. The diagnosis just kept stacking up. Even with my diagnosis changing throughout the years none of the respiratory issues stayed within their box. The trouble I was experiencing still couldn’t be directly connected to any of these diagnoses. The doctors just kept going back and forth from it must be the COPD to it must be the bronchitis. But the symptoms I was experiencing didn’t exactly match up. I have no medical background but I was the one experiencing the symptoms and I knew something was off. However No one saw any reason to research it any further., I was lost, frustrated, scared and quite alone. One morning one of my sisters who is an LPN and had been helping me to research my case ourselves called me all wound up. I found it. I found a condition that literally matches your symptoms. It’s called TBM
And she explained Everything to me. I was relieved, excited and terrified when I realized I may have yet another incurable disease. I made my appointment with my pulmonologist In Madison and talked with her about TBM (which is not a well recognized disease). She said she would gather as much information regarding the subject and get back to me. After our conversation I immediately began pouring through my sisters research and happened upon the Cure TBM group. I decided right then if diagnosed I was going to join this group.
The very next Morning I received a call from a very straightforward amazing doctor.
Dr Benjamin Siedes. He seem well versed with TBM and was confident that he would be able to help me. My heart lept with happiness finally someone who was willing to go that extra mile!!! He scheduled a Bronchoscopy ( my very first one) and while they were prepping me I was nervous and wondering could this be real, did my little sister working a full time job, raising a family on her own. Literally take the time to research and find the correct answer to a 30+ year question that Doctors couldn’t or didn’t see the need to explore . The answers came with Dr. Seides.
Yes yes, she did!! I truly was finally correctly diagnosed with TBM. Dr. Seides put me in touch with the most wonderfulBeth Israel Deaconess Hospital and, Dr. Majid and Dr. G. I was so happy to meet them and to find how hard and closely they work with their TBM patients.
Unfortunately being so late in the game it ended up that I am not eligible for the surgery which was difficult to deal with emotionally. If it had not been for Jennifer, Paula, Trish, Muffin, Kathy and everyone who has joined this organization. Well let’s just say I’ve been batting this for a very very long time alone Most would have given up. But I’m finding that those who have the support of others who are battling right beside you. Well they hold you up, stand beside you, encourage you, laugh with you, cry with you, and sometimes they are just quietly there for you, helping you to get up the next day and do your best to make it a good one. I’m Blessed with the friends I’ve made and the forever grateful for knowing the friends I’ve lost on this journey. It’s an amazing organization and I’m honored to be a very small but grateful part of it. God Bless you all ♥️

Having been recently diagnosed with TBM, my primary source of support and information has come from this organization.

I am so thankful I was told about this site , it has helped me so much with information I needed to know about my TBM !! Thank you

I became extremely ill and was in a coma for one month. My trachea was damaged due to being intubated and having a trach for that length of time.
Thanks to the Cure TBM group I have learned a ton about this awful disease. When I hear others stories I feel the love and support and learn so much more.

CureTBM was started by Jennifer Champy to raise awareness about TBM (Tracheobronchomalacia) and raise funds to be used for research into this misdiagnosed and misunderstood disease. As well as the foundation Jennifer also started a facebook support group where people could go and ask questions, share their stories and support each other through their diagnosis and treatment of TBM.
I was diagnosed 8.5 years ago and have been a member of the support group for 7 years.
I live in hope that one day the researchers will find a cure for TBM and no more children or adults will have to struggle to breath. Help us raise funds so we are able to give breaths to the breathless.

CureTBM was a lifesaver from the time I found them 6 years ago. There is so little information available for this condition and finding treatment and accurate information is almost impossible. A diagnosis of TBM can be very lonely. They helped me find a Center of Excellence for TBM where I ultimately had surgery. They helped me travel to and connected me to other charities that helped me
stay in Boston during the months of treatment and surgery. They continue to offer as their mission accurate up to date education and raising money for research. This is just a great non-profit that puts everything raised to a wonderful cause for sick people who have literally no other place to turn.

I appreciate this group so much! To have a place where you can connect with people that understand what you are going through is the biggest blessing. This group has helped me understand TBM , know where to go for help and how to live with this. Thank you all for being there. God bless you.

I was diagnosed with TBM last February by my pumonologist who could not answer my dozens of questions because he was not a TBM "specialist". I also asked my other specialists and pcp all of whom had never even heard of it. Through the Cure TBM Facebook page I have been able to acquire so much factual information, resources and support.

There is no other that supports this rare progressive condition. It is an essential site in order to promote much needed research,

I was diagnosed with TBM in April 2022. A nurse told me about this organization and I’m so grateful that she did. Very resourceful.

This nonprofit is making great strides in making TBM a known condition! They are reaching out to caregivers, doctors, and researchers, as well as patients, in the search for better care for those of us with TBM. After coughing incessantly for seven months with no other symptoms, I was diagnosed with a bronchoscopy by a wonderful pulmonologist in Atlanta. He then tested me for allergies. We got those under control, had a hiatal hernia repair to stop severe acid reflux, and used a nebulizer to remove stubborn, stubborn mucus. My TBM is under control, but I know that could change. Research is vital! Availability of services is vital! Education in the medical community is vital! This is what this nonprofit is all about!

Wonderful organization that works hard to support research

This group was a life saver to my sister when she had her TBM diagnosis! Jennifer is kind, caring, and resourceful. We don't know what we would have done without this group! As a result of the amazing work, I have become a board member with CureTBM and feel it is an honor to help bring awareness about TBM

Very supportive for those of us who have to deal with this debilitating disease on a daily basis. I have had an extremely hard time but the people within this organization are always there to support me as I navigate through different treatments.

Cure TBM has been a tremendous help in advancing TBM research and advocacy. Equally important, Cure TBM provides a safe and welcoming community for all members to share their story and connect. This organization has supported my family for years now, and we are so grateful!

Jennifer and CureTBM have been a life line for my family. My son Gavin has TBM and we knew nothing, didn't know were to go or who to see and CureTBM pointed us to life saving doctors, have shared so much info and support. I can't say enough about them!!

CureTBM helped me at a time in my life that I was desperate. I had been dealing for many years with severe breathing problems that had been attributed to asthma but did not respond to conventional treatment. I finally was diagnosed with Tracheobronchomalacia but it was so rare to be acquired as an adult that no pulmonologist I could find knew how to get me treatment. The internet was devoid of information to help me. My airways were collapsing 100% when I breathed out but I could find no help. When I found CureTBM, they had the only true patient education that I could find. They helped me find a center of excellence and physicians with knowledge that could treat me. To get there required me to travel from Dallas to Boston frequently. CureTBM helped me indirectly find organizations that could help me and also directly helped me with travel expenses that I could not cover due to overwhelming medical bills. This organization does not spend donations on anything but its mission. You can be assured donations go to life saving and life changing measures to an underserved population of very sick people and helping with a misunderstood orphan disease.

Just 13 months ago, back in June 2021, my husband had gone through his 12 hours long, 2nd TBP surgery. If it wasn't for Boston and Jennifer Champy and my many supporters we had throughout his journey, we would not be here today. His pulmonologist has told us, "if we didn't go to Boston, Mike would die here." We had no choice but to prepare and go to Boston.

Our intent was only supposed to be 2 wks at the most. Have the surgery and wait 2 wks for follow up. But instead 2 wks turned out to be 6 long months in the hospital at BIDMC. We fought so hard for him, if it wasn't for this group, I don't think I would of survived it alone. I'm extremely grateful that we have a new chance of living life again.

Thank you so much!

My daughter was misdiagnosed for years. Through my endless research I found Jennifer Champy and the group she created. She’s a true blessing and angel.

I am a caregiver. My wife and hero (she was my caretaker through my cancer journey, in remission for 13 years). Paula had suffered for 14 years going to multiple providers who ranged from not knowledge of TBM to saying they reversed the tracheoplasty to those who said lose weight to those who said she needed intense psychological therapy. He was a chairman of a pulmonology department at a major Chicago medical center and school. Then she found the TBM site. She found many with the same stories. We found Jennifer and BIDMC in 2917. Without the support of the group and our kids, Paul would still be suffering from respiratory distress. One should know there were diagnoses of GERD and allergy. There were other misdiagnoseds too. The TBM group are lifesavers. Paula is now a volunteer for the TBM group and works closely with the TBM leaders.

Finding CureTBM was life changing for our family! My son was diagnosed with TBM 5 years ago, and prior to that it’s something we’ve never heard of. He would spend weeks in the hospital, constantly sick, I think he spent more days in the hospital then at home for the first several years of his life. What made the biggest difference for him was finding the right doctors and the right resources. Through CureTBM we made connections and got referrals, and finally got my son the help he needs. He is like a new person now! He still has a long way to go, and CureTBM is always fighting for him, and others like him, to make sure everyone is getting the medical care they need and deserve. The founder and members of this nonprofit are some of the most caring and helpful people I’ve encountered in my life. The work they do for this rare disease is critical to families like ours. We appreciate them so more then I could put into words!

CureTBM and its director have been a lifesaver for my Mom and me. We didn’t know much about TBM nor did we have many resources when she was diagnosed in 2018. Through this organization we received much needed support, guidance, education and resources. My Mom was able to get effective treatment and incredible support, especially when she had tracheobronchoplasty in Boston. I know things would have been a lot different without CureTBM. THANK YOU!

My son has been diagnosed with TBM. Cure TBM has been a great resource for my family and I. We have learned so much and are now working with doctors who have a better understanding of TBM.

Jennifer and CureTBM were a huge resource for me after my diagnosis with TBM and throughout my treatment journey. She has been a source of steadfast support through the years. Thank you for everything!

Ever sense I was in my 20's I was misdiagnosed with asthma. I had 2 years in a row I became so breathless I would collapse if I walked a few feet. I was constantly coughing with a cough that sounded like a seal bark. I was placed in a medically induced coma for a few days short of a month so they could allow me to pass in peace when I was 47. When they finally "pulled the plug" i came out of the coma. I demanded a bronchoscopy. That is when they found my airways were collapsing. I had tracheobroncomalacia (TBM). They gave me 6 months to live. No one knew how to treat this with an adult. Most even after the diagnosis still did not believe it possible. I found this group on facebook and it changed my life. The community is so supportive of each other and never stop sharing information that helps all to learn how to survive. Jennifer Champy is the founder and because of her and this group my life was changed and spared. Through her and this group I learned to live and function with TBM. I also learned about a treatment at Beth Israel Deaconiss Medical Center (BIDMC). My trechea had reached a point that on exhale the full length except at the very top would collapse 95-100 percent. My life was at a point I was couch bound and on a bipap most of the day. I was on full disability. Because of the knowledge about BIDMC I went and they prformed a tracheobronchoplasty by way of an open thoracadomy throuh my back. It changed my life. No, I am not healed. Yes I am still on disability but I am able to breathe. I can do things I couldn't do for the preceeding 2 years. I have a life again. It is still limited greatly but it is a life. And it is because of this group that Jennifer started and continues to build that I have this life. I am a believer in GOD and I believe GOD put Jennifer on this earth for this purpose. So that this group could be brought together giving us all a life again and hope. I am now in my 60's.

Tracheomalacia is a new diagnosis for me and it was very overwhelming at first. I found Cure TBM and explored the website. It was a wealth of information and lead me to an amazing support group on Facebook. It’s a caring supportive group in a judgement free forum. I’m so grateful for this group. I’ve been able to help educate my family and friends with the help of Cure TBM. Thanks Jennifer Champy for all your amazing work.

I was diagnosed with TBM tracheobronchomalacia on 2018. I had never heard of this before and I am so glad that my local pulmonary doctor had and got the ball rolling as far as what to do next. I found this organization through Facebook then the website. This nonprofit has helped me so much learning about my disease and getting support from these extraordinary people, lead by Jennifer Champy. We are encouraged to share and help each other also. I thank God for all the contributors in this organization.

My 6 year old daughter was diagnosed with severe TBM at 2 years old. We did not get answers at our local hospital and after hearing many stories of the good work Boston Children's Hospital was doing for airway disorders on CureTBM, we traveled to Boston to get a second opinion. They found severe TBM and she had surgery. I have met so many amazing people due to this organization. I also have learned so much which helped me to advocate for my daughter. This is an amazing organization that helps so many people. I will be forever grateful for everything they do.

Without this group, we would've been so lost. This has been a very informative as well as supportive group providing so many experiences and scenarios. It has been an honor to be part of this group.

I was just diagnosed 11/2020. Scared and thinking I was alone I found this site and found more information and education than any doctor could give me and now I refer the doctors to our website.
I've made so many new friends too and it has made this new journey in my life not be as scary as it was.
Being in the middle of a pandemic and no nebulizer was available at any of our area pharmacies, they sent me one free of charge to me when I didn't know where to turn.
Now I would love to give back to someone else, please help us anyway you can to this wonderful site and
Thank you everyone for always lifting me up.

My name is Jackie Pignolet. I have been fighting this disease for over 25 years. I went from one Dr to the next to try to find out what was wrong with me. Every Dr that I went to listened to my story and promised to find out what my problem was. After about 3 years and all the test that the dr could think of they all said the same thing (sorry I did all I could do I can’t help you) . After going though this for about 20 years I gave up and just thought I was going to die until my daughter saw Jennifer and knew that that is what I had. She called me and gave me the phone number to make an appointment in Boston. I didn’t call thinking it was a waist of time so the next day sh called and made an appointment. I saw Dr Majid and he sent me for an MRI and saw my breathing tubes collapsed within 5 minutes. Imagine; I lived an hour away and none of my Drs knew about TBM. I’m in Florida now and when I told my new Dr what I had he said What’s that. I am 90% better than I was . Cure TBM is spreading the word to all Drs. We need help so others don’t have to suffer like I did

What an excellent informative support network this is. When I was diagnosed in the UK last year this seemed to be a poorly understood condition (and still is). However with help I have found a specialist group in the UK who are linking in to this amazing charity and the research going on in Boston.

I had tried every pulmonary doc every ENT and just got the run around nothing changing always in and out of ICU. Till finally cureTBM said let’s get you connected with Boston. Boston go a hold of me right away talked with my primary care to get certain tests ordered for me to do. I now have a video conference with Boston, my pcp and I after the tests are done to come up with a plan. I have hope we’re I had none

Year’s of struggling feeling like I was the only one and to finally find this group was a true blessing! Helping me through the difficult times is just what I needed on my journey . TBM is not a cookie cutter issues, it effects us all differently .....just reach out and this group will help

As a caregiver, my wife suffered for eleven years before diagnosis. We went from allergy to a pulmonologist, supposed expert in diagnosis of breathing issues, to seek psychiatric care. From being told to lose weight to someone who could not walk ten steps before needing to sit and recuperate to it is all in your head to this is your new normal.
My wife was surfing the internet late at night because she could not sleep when she found the site serendipitously. This was the first time that someone really listened. We got to BIDMC after another pulmonologist said it was not worth being examined. My wife gathered all of the testing scans and what-not and sent to BIDMC. She was eventually stent-tested ( walked me to the ground around Boston) and had the surgery. This was life-saving. I had gotten my wife back. She is now a buddingly successful artist crafter. She is also a moderator if the group and stays up late helping other patients with moral support. I know that my wife sees the group as her new family. My wife is Paula Casey and I am her husband of 46 years Tom Casey.

Jennifer & CureTBM helped me in more ways than I can explain. This community is a village, when you need information or reinforcement they are all there to help and you are not alone in dealing with all that goes with your disease, they are there to pick you up. I had never heard of TBM and felt very much alone when first diagnosed. I went to this site and immediately felt connected.
Information from fellow patients seems much more valuable as you know they are going through the same pains as yourself, and Jennifer Champy is the person whom I think deserves most of the credit, she keeps this going and is a wealth of information when looking for Doctors for your specific problem, we all need to give her that virtual hug she deserves.
I am sure there are other nonprofits that are great but this to me is the most valuable one for patients...

Jennifer and TBMAF is a wonderful community resource for patients diagnosed with TBM/ECAC. They are a community within a community and give the support this group of patients needs. Jennifer is a strong leader for the group and supports the patients to her fullest capacity. TBMAF strives to put their patients first to achieve the best outcomes and support for the patients.

CureTBM has helped us navigate our child's difficult diagnosis through emotional and educational support. Their commitment to research and education to further advance knowledge of this disorder is truely remarkable. They have been an invaluable resource for our family.

CureTBM.org has been a lifesaver for so many. My mother was diagnosed with TBM around 2015. She fought so hard to be heard when she was having a flare up, but even with a diagnosis, they told her she had asthma and treaded her with nebs. CureTBM.org put my mum in contact with other suffering this awful illness and offered her support and understanding. In the UK we seem so behind on diagnosis, understanding and treatment. Jennifer works so hard to be a voice to all, so no-one has to suffer like her, my mum and many more have and still continue to. Sadly my mum was unable to beat TBM and Sadly passed away in April. Jennifer has been such a support to me since. We will find a cure for TBM thanks to her.

My son was diagnosed with TBM when be was 4 months old. cureTBM has been a lifesaver from the time we found it. Such a valuable resource for parents and patients!

In 2016 I developed adult onset asthma, severe. They sent me in 2018 to National Jewish for a week of testing and consults. Th we found other issues, among them mild TBM. However the word mild relays when you look up TBM it is scary! I found this group and found the best answers and support you could imagine. The brave people here truly care. The leadership and members have connected folks with professionals, with resources, with each other and even made connections among specialists internationally. I can’t tell you what a difference they have made in so many lives and if anyone needed anything they will truly work relentlessly to assist.

My son had severe tracheomalacia and laryngomalacia from birth. Every inhale and exhale was a collapse. 99.8%. He Wound up with RSV and a high flow oxygen because his pulse ox was extremely low. His pulse ox dropped with every “simple cold” there was never a simple cold, They always resulted in admissions to Children’s Hospital here in New York. He was deprived from hanging out with other children and running around because he could not catch his breath. On top of my fear of him getting sick.
When we met the team in (Boston), Dr. Jennings and his associates, and other doctors that work with him with these kiddos, I cried my eyes out because they knew exactly how to help my baby.
My son used to sleep sitting up due to not being able to breathe laying down. His strider was normal to us but we didn’t know the extensiveness to it until he was scoped here at home. When I think back to the sound of him sleeping on our way to Boston in the car and to the no sound after surgery, I strongly believe that Dr. Jennings and his team saved his quality of life! A mother could never express the feeling of overwhelming gratitude and love for these doctors that helped her son!

I have a 1 year old son who suffers from the worst case of TBM that his doctors have ever seen. Thanks to this foundation, I have been put in contact with Boston Children’s Hospital and have been able to research. This is not only a foundation, but it is a family.

CureTBM and Jennifer have been absolutely amazing! My daughter was diagnosed with severe tracheobronchomalacia. It’s such a supportive group and I have found so many answers to questions I’ve had about her diagnosis.

CureTBM and Jennifer have been a huge blessing! We felt lost, alone, and neglected. No one quite understands what it feels like or how your life is impacted by not being able to breathe. "When you can't breathe, nothing else matters" and that couldn't be more true.

Through CureTBM, we were connected to fabulous treatment center and a dream team of multidisciplinary specialists at Boston Children's Hospital. It also made our out of state trip easier receiving tips and tricks from the facebook support group, places to stay, and travel accommodations. Jennifer, the founder of CureTBM is incredibly dedicated and strives to build the TBM community, support research endeavors, and collaborate with healthcare professionals to improve the trajectory for Tracheobronchomalacia.

Before getting treated, I had constant hospitalizations, unnecessary temporary fix surgeries, and missed out on daily activities. Post surgery, I have a dramatically improved quality of life, can go on walks with my friends, and be a thriving college student.

I am so grateful for the research and advances in the TBM community which ultimately allowed me to receive excellent treatments/surgeries. I will never stop fighting for a cure to TBM and raising money to say "yes" to research!

My son was diagnosed with severe TBM after years of being dismissed as asthma. This group has give me support, the tools needed to fight for his care, and the information I need to make the right decisions regarding care. Most importantly, it provides a community of families just like us. That support is priceless.

I've felt so alone in dealing with my son's Bronchomalacia, and this organization has helped so much. It has built an online community for parents to feel welcome and have support. Within that community I have been able to find resources and learned which medical professionals to connect with. They have helped our son, and while our story is still being written the journey has gotten better and we now know we are not alone.
Thank you Cure TBM! :-)

Jennifer is a warrior who has created a wonderful charity to help all those people around the globe with TBM, despite failing health and struggling herself she is the most dedicated and kindest woman I have ever had the blessing to come across. A woman like no other woman and one woman for a woman - go TBM

Was recently diagnosed as an Adult with TBM. Very scary. I had never heard of it and I have worked as a nurse for 32 years. My husband found this support group and I joined immediately. It is wonderful to have someone to ask questions that knows what you are going through. You learn daily by listening to our stories. The group leaders work hard to advocate for us and help keep us informed of research and new things that are happening with TBM. Very supportive group. A lot of encouragement but also a place to safely vent frustrations that you might not share with others. We get to celebrate successes and try to help those in need who are struggling. There are some mighty warriors here.

What a wonderful support group. This group has helped out so many adults and children get the right diagnosis and treatment. I don’t know what I would do without the amazing support I have received.

I have what they thought was Asthma all my life . But in 2017 I got diagnosed with
Tracheomalacia not knowing a lot about it found the on line support group which has been my absolute life line! I have learned a lot about my condition and how to treat it ! They are Amazing!!!!! Wanda H

I was diagnosed in 2016. I was an RN and had never heard of it! I started looking for more information and found it from this group. My mobility is definitely helped with the use of a portable CPAP which I learned about from this group.

This disease affects every aspect of the patient's and his/her family's life. Obviously, you can't do anything if you can't breathe. Doctors told me it was all in my head. I searched for 11 years for a diagnoses and began to think maybe I was crazy. My husband didn't know what to think. All that changed when I found Jennifer Champy, founder of Tracheo-Broncho-Malacia Airway Foundation. She directed me to the help I needed and I am breathing very well now. Jennifer literally spends her days and nights working for this organization. She makes sure patients, young and old, have the resources they need to be helped. There are no big corporations donating for research on TBM. Insurance doesn't even recognize it as an official disease so will not cover desperately needed equipment. All funds raised for research and equipment are through private donations and grants that Jennifer works tirelessly to write. Jennifer does not take any pay for this, she does it out of the goodness of her heart. You will not find a bigger heart, anywhere! She has spread the word that there is hope. In time, there will be help for patients suffering with this hideous disease around the world through more donations to this worthy non-profit.

I was misdiagnosed for nearly 30 years. My last extreme flare made me fear for my life. I pursued answers with renewed vigor. Once we learned what was happening to my trachea and bronchi, my physician just continued with the prednisone-antibiotic regime. Through the TBMAF website I learned so very, very much and also learned from others suffering with TBM. I shared this information with my physician and now we have nearly controlled my extreme flares for two years. I was hopeless but that all turned around. At least for the time being. The support, love and knowledge of those who created this Foundation is so generously shared. They work tirelessly to raise funds to discover a cure. We need a cure.

Without the knowledge and help of this foundation my son would not of got the help he needed .

Cannot thank this organization enough, it has been such a breakthrough in not only understanding my sons condition but also learning about new research, interventions and treatment that is currently being headed at BCH. This organization has also been a wonderful support system. I’ve met so many other moms who also relate to the everyday struggles and DME frustrations. It’s so wonderful to have this organization to not only spread further awareness and need for research but it’s also supported by people who have become friends and some family!

When I found out, in early 2016, that I had tracheobronchomalacia, it was a blessing to at least finally have an answer but I felt so lost. During my testing at Beth Israel Deaconess Medical Center In Boston, one of the nurses mentioned the Cure TBM Website and Facebook group. I finally could get some information and Resourses AND get in touch with others that had already gone through what I was going through. I don’t know what I would have done without the love and support of this charity! Now I pay it forward by trying to help others going through it.

I was diagnosed earlier this year with TBM and a nurse at the hospital suggested searching for a group to help understand it more. I found the CureTBM group on Facebook and it has been invaluable. I have learned so much and it is helpful knowing you are not alone, being able to share specific issues, experiences and questions and hear from others who've gone through it too. They're becoming a second family. And I can't thank Jennifer Champy enough for being such a wonderful champion for us all, in spite of her own serious health issues. I thank God for this organization and all they do.

This organization is amazing! My son was born with a double aortic arch/vascular ring that caused tracheobronchomalacia. It has been a long hard journey and we are so happy that we found this organization. Ms. Champy works hard everyday to reach as many people with TBM as she possibly can and to educate others about this rare disease. Her dedication to help others with TBM and their families is absolutely astounding!

TBMAF is a phenomenal nonprescription which is spreading knowledge and medical tips on how to effectively treat TBM patients. Our son has TBM and we are so happy this non-profit is in existence. Many times we have reached out to their website for much needed answers to help out medically challenged son to have a more fulfilling life.

My niece was born with EA/TEF that caused her to develop TBM at a very young age. Our family had no idea how to handle the diagnosis and did not know anyone who had dealt with it themselves. TBMAF brings people together across the globe, offering shared experiences, knowledge, and intellectual/emotional support to those who have TBM as well as their family and friends.

A unique organization providing much-needed support to the many people suffering from a virtually unknown airway disease. Provides educational support, spreads information to the medical and patient community. Provides direct support to those whose finances place them at a disadvantage.

In my case, the organization was directly responsible for giving me the information that I needed to get successful medical treatment.

This non-profit has supplied our family with unbelievable support from helping us get connected with the best doctors possible for our child to parent support when we struggle to get through the day. Their unwavering support if the tracheobronchomalacia community is literally saving lives and we are forever grateful to them.