Renate Huebner was diagnosed with pulmonary fibrosis at the age of 65 in August 2012. With 10 children and 38 grandchildren, Renate’s large family didn’t quite understand the disease at first. Now, after her death a year ago, the family is focused on the project Give Air and continuing the matriarch’s legacy. The family raises awareness for the disease with their blog and videos, in addition, they’re looking to establish The Give Air Renate Huebner Research Fund for Pulmonary Fibrosis at the University of Utah.
“We remember the day she told us her diagnosis and the family thought, OK, she’ll have to take some medications, maybe an inhaler and she’ll be fine,” they tell in the blog Give Air. “Little did we know we only had a few years left to spend with our Mom/Oma and those last years were going to be excruciating for her. PF is a silent killer for many months to years before patients ever realize or get diagnosed.”
Renate Huebner lived with pulmonary fibrosis for less than three years, during which time she was treated by the pulmonologist Dr. Jim Pearl at the LDS Hospital. Regardless of the attempts of both Renate and the physician to fight the disease, her lung function and quality of life deteriorated. With the help of the pulmonologist at the University of Utah, Dr. Mary Beth Scholand, Renate was placed on a lung transplant list. “At the rate her disease was progressing, she was not able to make it long enough to get her lungs. We lost our beloved mother on May 16th of 2015.”
But the Huebner family is determined to continue fighting, not only for their deceased mother but also because Renate’s 44-year-old daughter has also been diagnosed with idiopahic pulmonary fibrosis (IPF). The next step for the Give Air project is the 1st Annual Pulmonary Fibrosis “Pull,” which will take place on Saturday, June 11th in Kaysville, UT. The event will include a lunch, silent auction, bake sale, bouncy house, free candy cannon, tug of war, snow cones, and music to raise funding and awareness for pulmonary fibrosis.
The “pull” is also expected to result in the establishment of The Give Air Renate Huebner Research Fund for Pulmonary Fibrosis at the University of Utah. “This should be a super fun event for the whole family! Our goal this year is to raise at least $25,000 for research and to educate as many people as possible about this disease. Remember, early diagnosis is key and many more people can be helped in the future if we raise as much awareness as we can!”
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