• KyliAnn Lemons

Join The Fight Against CF!

Our very own Krista Chenoweth talked about her handsome boys and their journey with Cystic Fibrosis.


While spreading hope, she also wants to spread the word on how to join the fight against CF!

Below are 6 different ways to join the fight!!!

CFF


“The mission of the Cystic Fibrosis Foundation is to cure cystic fibrosis and to provide all people with CF the opportunity to lead long, fulfilling lives by funding research and drug development, partnering with the CF community, and advancing high-quality, specialized care.”


The Cystic Fibrosis Foundation is responsible for the countless strides made in therapies, treatments, and medication for Cystic Fibrosis. One day (soon) the CFF will be the reason CF stands for Cure Found. The Cystic Fibrosis Foundation is also the #1 reason why Cystic Fibrosis is the most amazing story in medicine.


Webpage

Facebook

Instagram


Colton Underwood Legacy Foundation


“The Legacy Foundation is a non-profit organization that was created by former NFL player, Colton Underwood to empower people with cystic fibrosis to live fully, dream big and support each other. The Foundation raises funds to provide equipment and resources for people of all ages living with cystic fibrosis.”


The Legacy Foundation’s most recent campaign was the “Inspiring Fitness Challenge”. The goal for this campaign was to raise awareness, create individual fitness goals, and raise $40k— we ended up raising $53k!!!!


The Legacy Foundation has given me SO much excitement. Being newly involved with their overall mission, it just feels like one big team has come together to lift people with CF up. People with CF are true warriors, and the Legacy Foundation won’t let anyone forget that. From “Warrior Wednesday” posts, to successfully supplying people with equipment that’s desperately needed, the Legacy Foundation is always celebrating.


You can get involved in charity events, research, or shop, here! ⬇️


Webpage

Facebook

Instagram

Sickboy Podcast


Sickboy Podcast- “Sickboy Podcast is hilarious, ridiculously insightful and absolutely determined to break down the stigma associated with illness and disease! The show started with three best friends who recognized that when faced with difficult situations, illnesses and diseases, people tighten up, they get awkward, and they simply don't know what to say. Taking the lead from Jeremie's life long battle with Cystic Fibrosis, the boys help people understand that sometimes the best way to deal with illness, disease and life is simply to laugh. Join the conversation every Monday over on iTunes, Soundcloud, Google Play or wherever you get your podcast fixin's”


These. Freaking. Men. Oh my gosh- I’m not a big podcast gal, but I’m hopelessly addicted to Sickboy. I was first drawn to it after watching the documentary (under the same name) after having a beer during the boys’ naptime, and feeling ballsy (up until this point, I haven’t watched anything on TV that had even a smidge of CF). Sickboy has taught me to LAUGH when it may be inappropriate, or frowned upon. It has taught me that I’m allowed to joke, while simultaneously taking things seriously. Oh, Sickboy, the love I have for you is immeasurable. You gross son of a gun.


*DISCLAIMER*


This podcast is raunchy, gross, and absolutely hilarious. If you’re offended by a few F bombs, and conversations that might make your stomach turn, you may want to sit this one out. If bad language and brutal honesty is your bread and butter (like it is mine), head to the website! ⬇️


Webpage

Facebook

Instagram



Gunnar Esiason


“Gunnar Esiason is a cystic fibrosis and rare disease patient leader, who is passionate about early stage drug development, patient empowerment and health policy. He is a MBA second-year student at the Tuck School of Business at Dartmouth and is also working towards a Master of Public Health degree at the Dartmouth Institute for Health Policy and Clinical Practice. At Tuck, Gunnar serves as a Tuck Center for Health Care MBA Fellow, a health care club co-chair and a club hockey captain. His first year course work included a First-Year Project with a health insurance start-up. Prior to Tuck, Gunnar received a BA form Boston College in 2013, worked on an enteral feeding product at a medical nutrition company, was appointed to the board of directors at the Boomer Esiason Foundation, and was the head coach of his high school alma mater’s varsity hockey team. Gunnar maintains the roles of patient advocate and director of patient outreach at the Boomer Esiason Foundation.

He has consulted on clinical trial development, a real world evidence population health study, and a cystic fibrosis-specific mental health and wellness screening tool. In 2019, Gunnar delivered the pre-commencement address at the St. Louis University School of Medicine commencement exercises. He has also been featured as a keynote speaker at more than two-dozen top medical centers, biotech conferences, and health industry events across the United States. His health policy opinions have been featured in Newsweek, The New York Daily News, The Hill, STAT News and Morning Consult among other news sources. A list of Gunnar’s publications can be found on the publications page.

Gunnar is presently working on an antibiotic market research paper with the hopes it will encourage industry and policy leaders to prioritize antibiotic development and innovation. Follow him on Twitter @G17Esiason.”


Gunnar was one of the first adults with CF that I discovered during my early research. He’s responsible for a large portion of my CF knowledge, and the reason for a lot of my hope for the future for the CF community. Thank you, Gunnar, for using your diagnosis as a platform to educate, discuss, and spread awareness about Cystic Fibrosis. Thank you for reshaping the way I thought about CF, shortly after my firstborn was diagnosed.


Webpage

Facebook

Instagram



Nathan Charles


Nathan Charles- “As the only professional athlete playing a contact sport with cystic fibrosis, I’ve faced my share of obstacles. But I never let it define me.

I now want to use my experiences to help others see what’s possible.”


Nathan Charles is the first success story I found when researching Cystic Fibrosis, after finding out Simon was diagnosed. He gives me so much hope for the future, and taught me that I will never dream “too big” for my boys. I hope to teach them the same (I always think Simon will be in MLB, and Abel will be in the NFL 😁). Nathan Charles is a former Wallaby rugby player— of course, the first (and currently, only) professional athlete with CF just so happens to play one of the most dangerous contact sports of all time. Cheers to you, Mr. Charles!


Webpage

Facebook

Instagram


James Richardson


James Richardson- “Motivating everyone around the world with – or without – chronic illnesses.”


James is a Cystic Fibrosis warrior and advocate. When James was a child, he was told he’d never be able to play sports. After pushing himself to beat the odds, he tried out for and excelled in every sport he could. Now, he owns #InsightFitness, located in Los Angeles, CA. His most recent lung function test was 100%.


Ensuring my boys know what it is to be tough, and to take CF by the horns, is something that has been extremely important to me from the very beginning. James has helped me stay optimistic in the vision I have for them. My hope for them is to be strong, prove anyone wrong if they say they can’t do something, and rise above any weakness that tries to set in. Thank you for the endless inspiration, James.


Webpage

Instagram

CFF Blog Post




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