Precision meds, phage therapy, gene therapy - Ali is so thankful for all the medical advances that have made her life healthier with a promise of a fabulous, healthy future. Even more important now, as she and her husband Austin are expecting a child of their own this year! And, guess what that makes me (Patty)? Yup, a grandma!!! Woot woot!
When Ali was born in 1988, we had hope but never dreamed CF medicine and life would change so much (for the better!) by this point. Cystic fibrosis is the greatest story in modern medicine. What was once a "fatal", then "early fatal" disease with CFers struggling just to breathe has become more and more a treatable genetic condition. That's all good, but there are still tons of CFers whose particular CF mutations don't benefit from the precision meds that are helping Ali and others live, breathe, and enjoy longer and healthier lives. And Ali isn't out of the woods - years of early CF meds and the progressive nature of this beastly condition cause damage to organs like the lungs, liver, and pancreas. Cancer rates are higher in those with CF, too.
More good news - researchers are digging into these long-term CF effects to make sure people like Ali who benefit from the precision meds helping their lungs don't then lose their health from liver or other-organ disease. The research is amazing - the minds at work on this disease (with spillover effects to other conditions!) are brilliant. We We WILL get there - "THERE" being precision genetic override treatment for ALL CF "types" AND treatments for ALL the havoc CF has wreaked in a given individual.
We will outrun the hourglass timer that has been CF - we've slowed down lung and other decline from CF, stopped it in its tracks for some CFers, and WILL get to the finish line on this crappy disease for ALL people and families unfortunate enough to draw the "CF straw" by genetic whimsy. Let's do this! To the cure! Finish all the research! Get these lifesaving treatments to work for all with CF.
Do this, please: 1. Join this year's Team AliKatz Great Strides Team right this second (here on this page). 2. Make a donation. 3. Share the heck out of your own and our social media/email/text posts to get more people involved, more donations coming in, more research done, more speed to the finish line on CF.
And then, if you can, come walk with Team AliKatz at Payson Park from 10 am (9-10 registration, 10 am start walk) to 11 or 12 or later, whatever works for you. You can come to Payson Park on May 18 (Saturday) for the "Walk" and not even walk, just say hi, drop off any additional donations you've got/collected, have a donut and coffee, and be an all-around great human. Okay? Thought so! Thanks so much for all the support over these past three decades. So much good life ahead for all, including for those with cystic fibrosis! Love, Patty (Grandma to be - woot! woot!)
Important note on Attendance at Foundation Events:
Infections can exacerbate CF symptoms and worsen lung function, so we ask attendees at Foundation-sponsored events to observe the following best practices to reduce the risk of germ transmission:
Regularly wash hands with soap and water or with an alcohol-based hand gel.
Cover coughs and sneezes with a tissue or your inner elbow.
Maintain a safe 6-foot distance from anyone with a cold or infection.
To further reduce the risk of cross-infection, the Foundation’s attendance policy recommends that all people with CF maintain a safe 6-foot distance from each other at all times while attending an outdoor Foundation-sponsored event. All Great Strides walks are non-smoking events.