Time is weird right now. Really weird to say that it would have been our 16th Great Strides walk this year. I have no idea how that happened. But, like almost everything with the pandemic, we are going virtual. It is much harder to ask for support this year. Whether this is the first time I’m asking you or the 16th time I’m asking you, I’m hoping you can support us as we raise money to find a cure for Cystic Fibrosis.
It’s hard to look back to where we were last year and not think what an unbelievable year it has been. Most notably, Trikafta, a life changing drug, was approved by the FDA in October of 2019. Trikafta treats the underlying cause of cystic fibrosis and it has proven to slow the progression of the disease and prevent the decrease of lung function. Megan was able to start Trikafta in November of 2019 and while we didn’t see huge changes, as others have noticed, we know she is maintaining really good health and that is exciting and such a relief. We know that Trikafta is a direct result of all of the hard work and fundraising and we wouldn’t have it without your support.
Although we are hopeful it might change, currently Megan's routine still includes almost two hours of treatments daily along with 10 different medications (the equivalent of 50 pills each day), just to stay healthy. There is no cure for CF. In 1962, a child with CF was not expected to live past age 10. Today, the predicted median survival age is 40 (and climbing!). We are raising money for research to give those with CF a normal life expectancy. Many of Megan’s medicines are relatively new and there are lots of drugs in the pipeline, so we know our fundraising makes a big difference.
The Illinois chapters of the Cystic Fibrosis Foundation are having a virtual pep rally on Saturday, May 30 at 11am on Facebook Live. Kelsey has been asked to sing the National Anthem to start it off. We hope you can join us.
We would appreciate any donations. Please note that cash donations (Venmo to Maureen-Riordan-1 or checks written to Maureen Riordan and sent to 1235 W. Belden, Chicago, IL 60614) will be doubled. Please ask your company if they provide matching funds. Many companies will match your donation.
We are continually grateful for the outpouring of love and support. Over the past fifteen years, Team Megan has raised over $925,000. Please help us continue to do all we can for Megan. We cannot be successful without your help. Thank you so much! Love,
Frank, Maureen, Megan and Kelsey