Dearest Family & Friends,
I know many of you generously supported me last fall and this seems like a quick turnaround ask. The reason is we moved our walk back to the traditional third weekend in May after our pandemic shift to November. I promise I will never ask for contributions more than once a calendar year!
Our walk is quickly approaching on Saturday, May 18 and I would love your support again this year! Each year I like to update you generous souls on just what a difference you are making. There are now about 40,000 individuals living with CF in the U.S.(for most of my 33 years, it was 30,000!) because people are living longer and healthier lives. We have helped bring to market a modulator that treats the basic defect of CF in close to 90% of our population. This means many with CF are going back to work after being on disability, having children of their own, even getting off lung transplant lists and living their dreams. But those in that 10% are still struggling with mutations more difficult to correct. A young mother called me the other day looking for guidance on how to answer her 8-year-old daughter, who is in the 10%, when she asked “when will it be my turn?”. While thrilled for those impacted by the transformational modulator, many who can’t take it, face heartbreak and fear while waiting for their miracle.
We are aggressively and wisely investing in very high-level gene therapy as we feel this is the best path forward to bring that miracle to all AND a cure at the cellular level! This sounds like “Star Wars” stuff to many, but so did the transformational drug ten years ago!! Curing CF is going to take more time and money than anything we have ever done, but I have no doubt that together we can do this! In fact, we must!
To donate, please follow this link with my sincere thanks. Click Here To Donate
My love and gratitude,
Sissy
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Updated July 5th, 2023
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