Katherine Stark

Gus’s Gang 2024

Dear Family and Friends,

“To everyone who has supported me and Gus’s Gang through the years, your contributions mean the world to me and to anyone with CF; it’s a huge deal, and it’s given me a new lease on life. Without your support that helped fund the development of TRIKAFTA, I would not be as healthy as I am today.

“There are so many new medications in the pipeline to help others with CF, but more progress can’t be made without funding.

“I appreciate your support from the bottom of my heart. Thank you!”   -- Gus Giblin

As many of you know, my nephew and godson, Gus, has cystic fibrosis (CF). For the past 22 years my family and I have raised funds to help find a cure for CF, an inherited, progressive disease that destroys the lung and digestive function of those affected, eventually robbing them of their ability to breathe and shortening their lives. There is still no cure for CF.

In May, we will once again be participating in Great Strides, the annual fundraising walk held by the Cystic Fibrosis Foundation to raise funds for CF research and patient care. I have been committed to this cause so that Gus and others with CF will have the promise of a longer, healthier life.

I am delighted to say that Gus, now 25, is happy and doing well. He is a certified EMT in Massachusetts and loves his job. It is no coincidence that Gus has chosen to help others for a living. He recently told me, “Having ‘grown up’ in hospital environments because of my CF, I saw so many people working hard to help kids like me. I am thankful for them and decided I wanted to do something similar.”  

Gus continues his twice-daily treatment with TRIKAFTA, the “miracle drug” to treat CF that was approved by the FDA in 2019. Gus and others who are fortunate to be able to take TRIKAFTA (sadly, it does not work for everyone with CF) have seen their life expectancy increase by several decades; to have CF is no longer a guaranteed death sentence. While he still experiences many other of CF's negative impacts, TRIKAFTA inhibits the progression of CF in his lungs, which is critical. He meets with his medical team twice a year, and his lung function is now “near normal” – miraculous to those of us who knew how poor it was just a few years ago!

We feel blessed to see Gus’s progress, but too many others with CF still lose their lives to the disease every year. So – we continue to walk!

I am asking for your support again this year, understanding that it continues to be a challenging time for many people. Please consider contributing, in any amount, to our Great Strides campaign. You may make a donation here, or you may send a check, made payable to the “CF Foundation,” to me at 5 Bartlett Road, Middletown, RI 02842. Or, if you prefer, you may Venmo a donation to me:  @Katherine-Stark-10.

 As you heard directly from Gus above, your support matters. He is truly grateful for your help, and so am I. We all thank you for whatever help you can give Gus’s Gang. You support has helped Gus, and others like him with CF, realize their dream of a brighter, healthier future.

With profound gratitude,

Kathy and Gus’s Gang