65 Roses Gala cancelled due to COVID-19; family reflects
TYLER, Texas (KLTV) - Supporters and advocates were supposed to get together for the 65 Roses Gala this evening, benefiting the Tyler Cystic Fibrosis Foundation chapter.
However, ”This year with DELTA nobody felt really comfortable, especially with what cystic fibrosis is, being a lung disease, we didn’t feel comfortable asking people to come and celebrate at a party,” said Holly Burke, the senior development director for the Cystic Fibrosis North Texas Tyler Chapter. She’s been with the foundation for eight years and said the last year has been a challenge.
“The financial loss definitely made an impact on our chapter. Fortunately, we have some amazing donors who still gave even without there being an event and so we’re very thankful to all of our donors,” Burke said.
Lori and Scott Knight are CF parents and advocates and helped get the Tyler chapter 20 years ago. Their daughter Grace was diagnosed at a year and a half. A few months later, with the help of family and friends they were able to hold a walk in Tyler to raise money and awareness.
“We asked the people in Dallas, ‘What does it take to have our own office?’ And they said if you can raise $100,000, then you can have your own office. And we raised $100,000, which was amazing because they were hoping that we’d raise $15,000,” Knight said.
The Knights said Grace has to do hour-long breathing treatments in the morning and evening. She is used to social distancing and wearing a mask all her life because that’s what CF patients have to do.
“When you have cystic fibrosis, they share bacteria so people with CF can’t get together with people with CF,” Knight said. “So we’ve kind of known social distancing, CF people are very knowledgeable about social distancing because they’ve been doing it forever.”
In 2019, the Food and Drug Administration approved a new breakthrough therapy for cystic fibrosis called Trikafta.
“It was life-changing, which is great, and some other great drugs and breakthroughs will happen as well, but if she was born probably ten years earlier, I look back at some CF patients and they didn’t survive it. It’s sad when you think about that,” he said. “But we’re very thankful that it did come along to greatly improve our daughter’s life.”
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