Participants gathered Dec. 8, 2018, at Angel Stadium in Anaheim, California, for the sixth annual Hike the Halo, a fundraiser for the Cystic Fibrosis Foundation (CFF). Hike the Halo and similar climb events across the nation raise money to fund research into finding a cure for the deadly disease. Cystic Fibrosis (CF) is the No. 1 genetic killer of children and young adults in the U.S.
In addition to finding a cure, funds also go to research and drug development, promoting individualized treatment and ensuring access to high-quality, specialized care.
Cynthia Weifenbach, principal/managing partner of PeekImage LLC in Orange County, California, welcomed those in attendance at Hike the Halo.
“The grocery industry is so very special to come out and support the Vendor Village. It’s great that we can all come together in a universal arena for the good of such a great cause,” she said. “I’d like to personally thank all the great companies—the retailers, the manufacturers and their amazing associates—who have brought out their fantastic products to create an awesome Vendor Village to support the Cystic Fibrosis Foundation. I’m also proud to share that through the sixth Hike the Halo, we have raised over $1 million to fund research.”
Weifenbach said when she first was exposed to CF she didn’t understand how devastating the disease is.
“It is a vicious and cruel disease that affects over 30,000 people in the United States,” she said.
CF primarily affects the lungs and digestive systems of those afflicted, many of whom take upward of 50 pills a day and spend hours taking breathing treatments to maintain their health. Weifenbach said Vertex Pharmaceuticals has made great strides in the past 10 years toward finding a cure for CF. In 2018, the company reported a “major breakthrough with their new triple combination drug that has helped improve lung function by 10-14 percentage points in just four weeks.
“That is phenomenal,” she continued. “And when I think about the average life span and how far we’ve come through research and the progress these treatments have made, it’s amazing.”
In 1962, the average life span for patients with CF was just 10 years, Weifenbach said. In 2011, the year of the first Hike the Halo event, the life span was 28 years.
“Now I’m happy to say that that life span is over 40 years,” she said. “This is phenomenal progress in just seven years, but we’re not done yet.”
Weifenbach pointed out the CFF is not funded by the government but by private donations and fundraisers such as Hike the Halo.
“That’s why it’s so critical that we all come together, we spread the word, we share it with our family and friends so that we can make a difference,” she said. “And I know that one day, the letters CF will stand for Cure Found.”
Weifenbach introduced the next speaker, her friend Sue Klug.
“Sue’s daughter Shelby was diagnosed with this deadly disease at the very young age of 2,” Weifenbach said, adding that Shelby “has fought hard throughout her whole life and faced the toughest fight of her life in 2015, when she went into pulmonary failure and the doctors told them that she likely would not survive. Shelby is a true warrior in every sense of the word, an inspiration to us all and has made huge strides in her recovery. Sue is here to share some insight into their lifelong battle.”
Klug said Shelby had suffered multiple pulmonary failures, collapsed lungs and many other illnesses before she ultimately was diagnosed with CF at age 2.
“I didn’t know what that meant,” Klug said. “I came to learn what it was all about very quickly. CF is about just trying really hard to survive every day—multiple breathing treatments that take several hours, 50 pills a day, clinical trials, blood draws, pulmonary tests and several times a year for two to three weeks at a time, Shelby would be in the hospital for what CF families know is called the ‘tuneup.’”
This is when CF patients are hospitalized and given “really big drugs” that try to attack the bacteria that’s infecting their lungs, she said.
“That was our life; that was Shelby’s life,” Klug said.
However, everything changed Sept. 11, 2015, when Shelby was admitted to Long Beach Memorial Medical Center. Within 48 hours, she was intubated, put on a respirator and was in both pulmonary and kidney failure. She began to get even worse over time and was put on life support.
“The doctors told us she likely wouldn’t make it,” Klug said. “In fact…they pretty much said there was no hope.”
She said their only hope was for a double lung transplant but, due to her dire condition, none of the area hospitals wanted to take Shelby.
“Frankly, they didn’t think there (could be) a good outcome, and they said it’s not fair to a donor’s family to take good lungs and put them into a body that was that sick,” Klug said.
Not giving up, the Klugs got Shelby admitted to UCLA Medical Center, where she ultimately received her double lung transplant. Shelby’s birthday is Dec. 15, but her mother said her second birthday is Oct. 27—the day she received the lungs that saved her life.
“Three years ago when we had this event, she had just come home,” Klug said. “She had been home for two days. At that time, she weighed less than 80 pounds, she couldn’t walk. She had neuropathy, she still had kidney failure, could barely use her arms and was not mobile. I’m so proud to say today she’s here. She’s doing amazingly well. She’s a sophomore at Chapman University; she’s part of the Tri-Delta sorority. She’s not weighing a lot yet—we’re still working on that—but she’s mobile and healthy and I tell you, if it weren’t for events like this, if it weren’t for people like you that come out and help us make a difference, if it weren’t for the Cystic Fibrosis Foundation that fights for all 30,000 kids in the U.S. that have this disease and, most of all, if it wasn’t for the grace of God, I really don’t believe she would be here today. So my real message is thank you so much for what you do today and every day to help kids like Shelby have a future. Thank you.”
Totals from this year’s CF Climb fundraisers were not available by press time, but in 2017, the events raised nearly $2 million to help support life-saving research, care and education programs.