Tracheal Stenosis Foundation, Inc.

Never ever give up!

Today is Rare Disease Day ! Share your story below with the hashtag

Everybody give a warm welcome to THE AMERICAS 🌎, the last region to join the activities! Over 300 million people globally live with a rare disease.

Uniting our voices 📣 across North, Central and South America has lead us to a great collaboration 🤝 between countries and major advances in rare diseases.

👉https://www.rarediseaseday.org/page/news/many-strong-proud-connecting-rare-disease-day-across-continents👈

Tracheal Stenosis life! 😉

When you have as they say "a life threatening disease" like Sickle Cell it really opens your eyes to value your time, and the time of those around you ⌛

How do you live today to the fullest? Give us your tips 👇👇

Its rare disease month! How do you plan to show off your stripes?

It’s less than a month to go to ! 🎉

How are you getting ready for the Day? 🤔

Come to the Rare Disease Day webinar next week and learn more about how to use social media to raise awareness on Rare Disease Day👇

us02web.zoom.us/webinar/register/WN_5jpx5DEnTFqG9j5bMiCDmA

Happy birthday to the founder of TSF, Kesi! Thanks for all you continue to do for the TS community.

TOMORROW Thursday, April 2nd Dr. Kristin King, Passy Muir VP of Clinical Education and Research, will be presenting a two-part COVID-19 course that addresses the needs of patients with tracheostomies and the healthcare professionals who care for them.

Part One provides an overview of what is known to date about the coronavirus, how it may impact patients with tracheostomies, and what steps should be considered for this high-risk patient population. Part Two will shift to expert clinical specialists who will address your questions, providing answers about working with patients with tracheostomies, mechanical ventilation, and speaking valves.

Visit https://www.passy-muir.com/remote-live-inservices to join these courses or for more information 🗣

This course is offered for up to .25 ASHA CEUs and up to 2.5 contact hours for RT and nursing continuing education.

The video below is a beautiful tribute to the wonderful doctors, nurses and other healthcare staff working hard everyday to care for so many affected patients. Thank you for all you do!!! 🙏🏾

Rising up across America: Saluting the heroes saving lives and warming hearts During this time of uncertainty as the world grapples with the coronavirus pandemic, health care workers, first responders, nurses, grocery store employees, truck drivers and many more are stepping up to keep our communities safe. TODAY salutes those doing all they can to make life a little bit bett...

I am always appreciative for the memories that Facebook shares. It’s been 4 years since I made this post in remembrance of one of our TS angels. On this day, we remember and honor those we lost....

I wanted to take this opportunity to thank everyone for the outpouring of support and condolences given to the Snyder family. We have a wonderfully supportive group on FB and I am sure your love and sympathy was also felt by the family. The purpose of this foundation has always been to raise awareness and educate others. So often we share stories about our procedures, surgeries and treatments on our personal pages or through Facebook support groups, but never have I seen a post spark so much attention. While most of us have never had the opportunity to meet Cheryl, our hearts were shattered knowing that she suffered and struggled to breathe up until her last breath. It affected so many of us because many of us have had moments or know someone who's breathing became so constricted or labored that we were rushed into a hospital, yet were fortunate to come home. To date, Cheryl's story has reached 12,598 people. The original post was shared 44 times and received 179 "likes" or comments. The Tracheal Stenosis Foundation page has received 101 new members within the past 5 days thanks to the support of Cheryl's daughter, Michelle. Cheryl's story has been recounted on over 60 personal FB pages. It's prompted members of the tracheal stenosis support groups to discuss medical bracelets and emergency responses to "mucous plugs". I have also shared this story with a number of our doctors. Cheryl, my sister and my friend, your death was not in vain. Your life, your struggle and passing has brought this rare condition to nearly 13,000 people and we will continue to crusade in your memory to make sure an additional 13,000 are aware, listening and educated on this disease. Our only solace is knowing that you are at peace and breathing freely. With love from all of your Tracheal Stenosis friends!

This is so my life and the life of many Tracheal Stenosis sufferers!!!! Does anyone else feel this way with simple household tasks? Please share!!

Going the distance with her breathing, Amanda Fierro has made news. Way to go Amanda! Thanks for spreading awareness and being an example for never giving up!

Amanda Fierro Interview Amanda Fierro Interview

Please join me and wishing Nikki Peebles Riley, a very very happy birthday and cheers to many more. For those who haven’t met Nikki, she is the Program Director of the Tracheal Stenosis Foundation. She does an enormous amount of outreach and helps coordinate the TSF events that we have hosted throughout the years. No matter how stressful the planning of the events become, Nikki is always there with a big smile and hug to tell me it’s all going to be alright. Nikki, I couldn’t have done it without you! Happy birthday to my friend and our TS sister, Nikki! 🎉🎊🎁🎈🎈🎈

Our challenges and struggles don’t define us or limit our dreams!

Best of luck to Denver Mayoral Candidate, Jamie Giellis!

https://www.9news.com/mobile/article/news/local/local-politics/denver-mayoral-candidate-jamie-giellis-to-undergo-surgery-for-rare-breathing-condition/73-f35ac9b8-f9e1-43d9-8bb7-b7b2194f12b9

Denver mayoral candidate Jamie Giellis to undergo surgery for rare breathing condition Giellis said she received many questions during her campaign about her breathing and has gone public to explain the underlying medical issue.

Happy International Rare Disease Day to all our TS friends. Nikki Peebles Riley, Kenyetta Riley and I, Kesi Dorner-Wright, had the pleasure of presenting at Georgia’s Rare Disease Day this year at the GA State Capitol. We received so many questions about tracheal Stenosis during the event and for nearly everyone we encountered, they had never heard of our condition. Let’s continue to bring awareness and let our voices be heard!

I woke up this morning thankful for the ability to breathe! 13 years ago, I was fed Thanksgiving dinner through a feeding tube after undergoing an unsuccessful tracheal resection. I had a trach for the next 8 years following that resection and was told I would likely live the rest of my life with a trach. With the help of some wonderful doctors, my trach was removed 5 years ago. I could taste food again, I could smell through my nose, I could breathe on my own, I could uncover my neck and not worry about stares. I am thankful for all the doctors and nurses at MGH especially Ellison 19! I am thankful for the TS friends that I have made that share my experience. I am thankful for the guidance of my Academic Advisor that encouraged me to share my story and start a non-profit organization. I am thankful for the ability to hold conferences and bring people together. I am thankful for the wonderful volunteers that give their time and efforts to pull these conferences off. I am thankful for all those that prayed for me and with me. I am thankful for my family and friend’s love and support and I am thankful for the chance to wake up today and share my blessings because sadly, some of my TS friends are no longer with us to do the same. Happy Thanksgiving to everyone! Please share what you are thankful for!

Vanderbilt Airway Study Meetings in Atlanta, GA 10/7/18

Having dinner with some of my favorite people! Vanderbilt Study Patient Advocates!

Good Morning TS friends and supporters. I received a couple questions recently about the upcoming meetings on October 7th. I apologize if the information has been confusing. For those who attended the Tracheal Stenosis Foundation Conference last year (2017) in Atlanta, we announced that we would move to a bi-annual schedule, thus having the next conference in 2019. When Vanderbilt informed me that they would like to host a meeting in Atlanta to give an update on the Airway Study, we had initially planned to combine a TSF event with Vanderbilt/ NOAAC Study, but with two meetings already planned for October 7th, we decided not to have additional meetings. With that said, Tracheal Stenosis Foundation will host a weekend event again in June 2019, similar to previous events hosted in Atlanta and Chicago. We will make sure information on location, hotel and an agenda is sent out well in advance.

We are excited to attend the Vanderbilt Airway Study meetings on October 7th. There is brunch planned that morning for Airway Study participants and guests. And a meeting that evening to go over study results. If you need additional information about the October 7th meeting, I encourage you to reach out to Catherine Anderson. I look forward to seeing many of you there. And for everyone else, see ya in 2019!!!

Have a great rest of the week:)

https://www.facebook.com/events/215306755751104/

Hello All,

I received numerous inquiries about the next Tracheal Stenosis Foundation Conference. For those that attended last year's conference, we had announced plans to host these events every other year to keep costs down and to continue bringing new and exciting updates from the medical professionals. With that said, we didn't plan to host an event until 2019, but there has been a change in plans. I was contacted by Dr. Gelbard's team suggesting that we bring everyone together this year to discuss findings of the Airway Study.

The American Academy of Otolaryngology-Head and Neck Surgery Annual Meeting will take place in Atlanta, GA this October. Therefore, hundreds of ENT professionals will be in attendance in the city of Atlanta for several days. With this in mind, we will host a 2-day event which will include a large Meet & Greet with doctors, patients families and supporters.

We are planning an event for the evening of Saturday, October 6th. The next day we will host a large Meet & Greet on Sunday, October 7th, which will include presentations and updates from the NOAAC Airway Study.

Please stay tuned for hotel information and more details. I am working with the Vanderbilt team to put together an agenda and finalize the location.

If you have any questions, please feel free to inbox me at the Tracheal Stenosis Foundation page. Please share with new members or patients.

I look forward to seeing you all again this year and meeting new faces.

-Kesi Dorner-Wright