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Taylor Roesch Lizzadro

Taylor Roesch Lizzadro

I am on the board for FestivAle because my 24-year-old brother Dylan has Cystic Fibrosis.

 

18 years ago, Dylan, was fighting for his last breaths of air as he was Heli-ported from the suburbs to the rooftop of a hospital here in Chicago. 6 months later, at the age of 3, Dylan was diagnosed with this ugly disease and we were told he would be lucky to attend college. Dylan has been hospitalized many-many times for weeks on end, would take over 40 pills a day, 3 nebulizers, chest physical therapy, feeding tube at night, 3 shots in his arm every 2 weeks, doctor visits; the list was endless.

 

In 2012, Dylan’s lung capacity was quickly declining. We received a phone call that the FDA fast tracked and approved a drug called Kalydeco. At the time, this was the fastest the FDA had ever approved a drug and it happened to be effective for my brother’s rare mutation, which makes up about 4% of the CF population, or 1,200 people in the world. Kalydeco tricks the extremely rare CF gene Dylan has, into functioning correctly.

 

Result: Dylan's lung loss has been controlled at a level like the rest of the population, hospital stays almost completely gone, reduction in medication, and his feeding tube was removed when he was 18. Although this new drug is not a cure, it has extended and enhance the lives of those who are lucky enough to receive it.

 

Today we have real life saving results. But this story isn’t about my brother or about my family. This is a story that isn’t finished yet about the CF community. Since 2012, Kalydeco combined with other drug combinations has brought this same experience to about 90% of the CF population. This is an incredible milestone only made possible by generous donations of all types, and by people showing up to support the cause; BUT 90% of CF patients is NOT the finish line. 

So here we are to finish the job we have started. We have a lot of work to do to help ensure research continues and all patients have this same experience and opportunity that my family has been blessed with. 

I hope you can join me on September 30th to cheers our glasses to the incredible work we have accomplished, and support further research so one day CF can stand for CureFound.

Best - Taylor

Thank you for your consideration of helping out the CF community. There are 4 ways to donate to this event: sponsorship opportunities (which includes tickets to attend), a donation to this page, buying a ticket, or donating an auction item.

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