Hello,
I have to say CWL has been a life saver for me and my family. I have a baby daughter that was diagnosed with LM very young. She had such a hard time breathing and I was so worried for her everyday. Her paediatrician said it was a watch a wait period, which was excruciating for me. And my Family Dr could hardly pronounce Laryngomalacia!! Through the guidance of Stephanie and other moms on the page, I had a lot of questions answered and knew what tests were needed and what they would entail. We got through the first year of my baby's life with confidence support and knowledge. Thank you CWL!:)
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- EIN 45-2424869
- 7327576242
- 55 Leonardville Road first floor Belford NJ 07718 USA
- www.CopingWithLM.org
- Facebook page
- copingwithlm
- Add to Favorites
Words can’t even begin how this organization not only help my child,but helped me. This organization connected me to a world full of mommies that related to my situation. No one in my family has ever heard of Laryngomalacia and to feel so lost until I came across this
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cassieelynn, Client Served
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Nonprofit Overview
Causes: Health, Health Support, Patient & Family Support
Mission: To provide worldwide support, strength, and education for families coping with laryngomalacia, tracheomalacia, bronchomalacia, and pharyngomalacia
Results: As of December 31, 2020 252 care packages were given in 2020 throughout 45 US States, Canada, Australia, New Zealand, United Kingdom, and the Philippines. Online Caregiver Support Group: 5,211 members Additional Support & Education Virtual Malacia Meet-Up RARE Bear Program By RARE Science, Inc. Project Pajamas Chibebe Snuggle Pod Program by Chibebe US & AU Free Printables To Promote Awareness And Education World Airway DIsorders Day The Mask Up For Malacia Campaign Lu The Laryngomalacia Lamb welcomed Trey The Tracheomalacia Tiger, Bri The Bronchomalacia Bunny, and Pax The Pharyngomalacia Pony to Coping With LM. The CWL Crew's mission is to provide comfort to their airway friends, raise awareness, and normalize the use of airway-related medical devices. In September of 2020, Coping With LM honored Airway Warrior Klay's battle with childhood cancer by adding cancer treatment as an approved procedure for the Breathe Easy Care Package Program. Coping With LM launched the first-ever Malacia inspired Instagram gifs. Social media gifs give supporters an opportunity to raise awareness in a whole new way! In 2018 Coping With LM partnered with Dr. Prasad Thottam, Dr. Robert Conway, and Dr. Gary White for one of the largest studies on laryngomalacia ever done. Our mission? To prove that laryngomalacia affects the quality of life in children as well as in their caregivers. With the help of our brave caregivers, we not only accomplished our mission but have forever changed the way laryngomalacia is viewed and ultimately, treated. On September 7, 2020, The Burden Of Laryngomalacia And Its Effects On Caregivers Study was published in the International Journal Of Pediatric Otorhinolaryngology. History made. "This is a huge milestone for the airway community. Caregivers are now validated. They were never overreacting. They were never exaggerating. It was never just some noisy breathing. As a Malacia Mom myself, I am forever thankful for Dr. Thottam, Dr. Conway, and Dr. White for their unwavering commitment to raising awareness and advocating for compassionate care," said Coping With LM Founder Stephanie Hueston.
Target demographics: families worldwide
Direct beneficiaries per year: over 4,000 families
Geographic areas served: Belford, New Jersey
Programs: Breathe Easy Care PackageProgram, Project Pajamas, Chibebe Snuggle Pod Program, Malacia Meet-Ups, online support group, and educational resources.