When we found this group it was like seeing a lighthouse in the middle of a storm. The support and encouragement is incredible. They help so many of us and I am forever appreciative of the work that they do. My son is 4, has TBM and has had a Posterior Tracheopexy at Boston Children’s Hospital.
My husband has been diagnosed with TBM roughly 3 years ago. No one really knew what he had. He was in and out of the hospital, intubated/extubated five times. They tried five different types of stents and all failed. He lives with this destructive cough 24/7, mucus plugs, chest and pneumonia infections and has to do monthly bronchs. Last year, he had a robotic tracheobroncoplasty and still till this day he is living in a chair coughing mucus in a bucket. He has to use oxygen, cpap, chest vest, and 5 nebs a day. This disease nearly killed him five times already.
I wanted to understand more about TBM. Just so happens I found CureTBM on Facebook! Communicated with Jennifer briefly about our situation, she has been so helpful with it all. We found out that they have specific Doctors who specializes with TBM, connections to fly to Boston and to get Hospitality homes set up. Without Jennifer, we wouldn't of known what we have out there to support us. It feels good to know that we are not the only ones going through this.
Next step is to go to Boston for an evaluation and redo of trachaebroncoplasty.
All I want for my husband, is to be healthy and to be able to breathe again so we can both start living our lives.
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
I am so thankful for CureTBM and Jennifer! She is the heart of this organization! My son is nearly 12 years old and has struggled with TBM his whole life. He wasn’t diagnosed until 5, but we didn’t have physicians who understood what that meant until we found BCH when he was 10 years old and in critical condition. I connected with Jennifer and CureTBM this year as he was undergoing his second tracheopexy surgery, and the support she and this community has provided me has been invaluable. When you struggle together and understand each other’s pain, you truly become family. I am forever grateful for each person I’ve connected with.
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.
My 8 year old nephew, Kosta developed tracheobronchomalacia (TBM) as a result of a rare birth defect which caused him to have severe breathing problems and constant respiratory infections.
Although he had corrective surgery a few days after he was born, it never completely fixed the issue. For years, he kept getting sick, had trouble breathing and was going in and out of the hospital and was never properly diagnosed and he ended up being treated improperly. Thankfully, because of the doctors at Boston Children's Hospital, he was properly diagnosed and they recommended and performed life changing surgery for him to correct his airway and breathing issues and although, there is not a cure as of yet, he has become a brand new kid who is able to live life and enjoy it!
I first became aware of Cure TBM and it's founder Jennifer Champy after my sister-in-law began doing online research about TBM and she came across the Cure TBM website and support group.
Jennifer and Cure TBM have been an constant source of knowledge, help, support, love and caring for my family and for all of the other families that are in need of help in navigating through this challenging and life altering disease They work tirelessly to raise funds, promote awareness and educate others on TBM all in the hopes of one day finding a cure for TBM.
I am so incredibly thankful and grateful to Cure TBM and Jennifer for everything they have done for my family and for all the other families.
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!
I was diagnosed with TBM after being placed in a nearly month long medically induced coma due to the fact I was misdiagnosed for years and they were simply waiting for me to die. Once they knew what I had, noone could treat me because of lack of knowelge in the field. I found this site and it changed my life. I was able to talk to others with the same disease. We help each other to learn what to do. It led me to Beth Israel Deaconess Medical College where the leaders in the knowelege of this disease performed a very complicated surgery that has improved me greatly. I have gone from terrable struggle to a life with much more ability. If I had not found this group, if I was still alive, I would be be on oxygen and bedfast right now.
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.
It took us 2 years to find the right doctors and get the right diagnosis. Two years of ER, ambulance and ICU stays. When we finally found the right doctor and the right diagnosis we were burnt out and then... then we got lucky we found this organization we found other families who knew exactly what we were going through. We found Jennifer and her wealth of info and unending support. Cure TBM is a beacon of hope and a circle of more than friends. This condition is terrifying and so badly misunderstood by so many doctors. Jenifer and Cure TBM are making incredible strides in connecting patients, resources and medical professionals in a way that supports patients and their medical teams. That allows for research while supporting those suffering today. I believe in TBMs cause and I’ve seen the wonders that it can do. We, my family wouldn’t be where we are today without this organization.
Thank you Cure TBM!
My 2 year old son was diagnosed with TBM in May and I just happened to find this website after meeting another TBM mom in the hospital. She turned me on to this group and it is amazing how much love support, kindness, tip and tricks they’ve provided to me and my family. We were feeling so alone in our struggles and now we have an incredible support system around the globe.
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!
I didn’t know about TBM until 4 years ago when all of a sudden my health became so poor I had to leave my career. I had a doctor mention it as a possible issue and was connected to other TBMers on Facebook. Here I was connected to BIDMC and their airway team. 1.5 years ago I had my first appointment where for the first time in a long time I was given the feeling of hope. Their team worked diligently to find a way to find a more comfortable tracheostomy and eventually remove my trach. It took a lot of surgeries, infections and complications, but last May (2019), I had my trach removed with a tracheal resection/reconstruction. Almost a year later and I still am without a tracheostomy. Not to say things aren’t still a struggle, they are. But I have the support of my entire medical team at BIDMC now and I know they always have my best interest at hand. I am a difficult patient, but my complex medical needs have always been met. I don’t know what the future holds for me- but I’m confident in my medical care thanks to this organization that helped connect me to the right doctors. Thank you Cure.TBM for helping me to get a chance a a better quality of life. We will always be grateful to this organization and support it any way we can!
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! :-)
CureTBM foundation and support group is an excellent way to get information on TBM. Whether you have been diagnosed or looking for places near where you live to get treatment, the CureTBM foundation and support group is an excellent place to start your search. CureTBM is continually raising funds to enable research into one day cure TBM.
I was diagnosed with tracheobronchomalicia in 2016. I live in Australia and for 18 months I didn't know anyone who had this disease until I found CureTBM foundation and reached out to Jennifer Champy. She told me about the support group and I joined and have had the support of other members who truely understand what it is like to have TBM. I had Tracheobronchoplasty in April 2018 the first adult that we aware of that has had this surgery in Australia. The work that BIDMC is doing in research will improve the diagnosis, treatment options and hopefully one day a cure. They need your help to fund the research.
We need your help to breathe.
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
Laryngomalacia, tracheomalacia and bronchomalacia are a difficult subjects to find some information about. Also, is really hard to find skilled professionals. I´m mother of a three year old boy who was born with laryngomalacia and I founded an NGO in Brazil about this subject too. For these reasons, I have been following some groups and projects since 2017. And, at some point, I found Jennifer. Cure TBM have many incredible things. I think that you have a wonderful proposal and really make so much difference in people´s life. I realize that there is a very strong commitment here. I really believe that invest in research and in specialization the most effective way to improving the lives of patients. Life is about loving and caring for people. Jennifer I'm your fan. Cure TBM is one of the most amazing projects that I've found. Thank you for sharing, inspiring and making a difference every day. God bless you! ❤❤❤
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!
CURE TBM has had such a positive impact on our lives! Prior to connecting with the organization and getting an accurate diagnosis and appropriate treatment plan for our four year old son who has TBM, we were floundering! The work that Jennifer does for this community is outstanding. Her dedication is unmatched. We are so thankful for this organization!
This organization has done so much to help us as we navigated life with our 1 year old with TBM. We had been struggling since his birth to get a proper diagnosis and treatment plan. With Cure TBM and the support groups Jennifer has helped to set up we found confidence in our decision to go to Boston for care. We have also found friendship and support through the many other families dealing with this disease.
CureTBM.org helped me tremendously after my diagnosis and throughout my treatment. They were a huge resource for me. Thank you for all your help!
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!
Where to begin? This nonprofit saved my child’s life.
My husband and I had resigned ourselves to a life of hospital stays, antibiotics, and breathing treatments for our daughter before finding them.
One day, in my research, I stumbled upon a Facebook group led by the founder, and it was like a light at the end of the tunnel. With their guidance, support, encouragement, and knowledge, we were able to get a life-renewing second opinion from Boston Children’s Hospital. Her journey is long from over, but knowing that I’ve been connected with other moms and physicians who know my child’s airway disorder is a gift that can never be fully described. Thankful doesn’t cut it!
This is an amazing organization that provides knowledge, support and research. My 5 year old daughter has Tracheobronchomalacia and largynomalacia. It has been really rough and isolating. These conditions are not well known. But this organization has helped give me strength and information to help me fight for my daughter and get her the care she needs. I have also met so many amazing people who are dealing with the same things....it makes this journey less lonely. This organization also supports research that will help develop new treatment options that so many patients need. I am so grateful for everything this organization does.
This wonderful organization has provided our family with knowledge, support and friendship as we navigate life with a toddler born with ea/tef. Our little boy is currently recovering in hospital from his tracheopexy and post op complications. Without this organization I would probably find this journey way more overwhelming. I'm so grateful for Jennifer and everything she and has done for our family
This is a wonderful organization. When I was diagnosed with TBM disease I didn't have a clue what it was. Through them I have found the support I need. The resources are extensive and the people are amazing. Through them this disease will not take me out without a fight.
My daughter has severe TBM, and TBMAF helped me get information about treatments and surgical options for her. When we didn’t know where else to turn, we had this resource which compiled pediatric information to help us get her to the best hospital in the country that could help her. Every piece of our journey has shown us how grateful we are to have this type of resource available.
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.
With 2 boys ages 4 &1 both with a diagnosis of tracheomalacia and our 1 year old with laryngealmalacia as well, this rare roller coaster ride head been made a bit easier with the support of this organization. As a present of not just 1 but 2 children going thru this, having a group to reach out to fir suggestion. Advice, support, middle of the night or in the hospital, no parent could ask for more. The education on this disease is improving, technology and treatments as well are makingbstrides but there is still a long way to go. The impressive factor is the support is worldwide. I feel forever grateful to live with the medical community that is world renowned for it medical care, knowledge and abilities at my back door here in Massachusetts. I support and look for support every day from this group and recommend it to anyone in this similar position. It takes a village to take care of someone, this is our village! ❤
After years of no diagnosis, misdiagnosis and many failed treatments, I turned to social media for support. Hoping to find just one other family whose child was suffering like ours, I found Ms. Champy and her support group, Cure TBM.
Immediately she connected me with resources and staff at Boston Children's Hospital, the only pediatric center in the United States performing surgical treatment on kids like mine. Within a few months, records were transferred and assessments completed. That same year we traveled to Boston for a dynamic, scary surgery, which turns out to have been completely life changing.
Through it all, Ms. Champy and the Cure TBM supporters were with us. Sending cards, checking in, talking to hospital connections about our son to ensure a great outcome. Now a year post-surgery, he is doing amazing, off all medications, and thriving like his friends. 5th grade is treating him well, as is the basketball team, flag football team, lacrosse team, and baseball team.
Thank you Cure TBM, for giving us education, connections, and mostly hope. You are saving lives with your tireless efforts to cure this rare disease!
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 cares so much very for those that are afflicted with TBM. They raise funds to buy special nebulizers for pediatric patients like my son,Alex. We let our doctor know we needed a kid friendly nebulizer and were given A donated machine that TBM had given BCH. Just this week donations of toys and activities were given to children staying at BCH while having surgery for this condition or while in the hospital ill with this condition. They care so very much and lend a helping hand whenever necessary.
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.