By Will Johnson
HOUSTON – In a world where negativity is often the norm, it is refreshing to see a person or organization striving to make a positive difference.
One such person is former Grapeland resident Alyssa Caveness who was recently presented with the Sierra Award for her efforts in raising money for the Cystic Fibrosis Foundation.
“The award is given every year by the Cystic Fibrosis Foundation (CFF) to someone who goes above and beyond what is asked of them and who truly exemplifies what giving back to the CF community means. There have been 30 recipients since it began and I was awarded it this year,” Caveness said.
When asked how she became involved with the CFF she said it was because of her best friend.
“You might remember Tiffany Ellis. She was my best friend. I donate my time, my money and my energy to the cause because of her. It’s a way to honor her life and her friendship,” Caveness explained.
“I’ve been working (volunteering) with the CFF since 2009. There is absolutely no public funding for cystic fibrosis research because it only affects about 30,000 Americans each year. The funding for research is all private donations. We raise all of our money to conduct the research.”
According to the CFF website, “Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. In people with CF, a defective gene causes a thick, buildup of mucus in the lungs, pancreas and other organs. In the lungs, the mucus clogs the airways and traps bacteria leading to infections, extensive lung damage and eventually, respiratory failure. In the pancreas, the mucus prevents the release of digestive enzymes that allow the body to break down food and absorb vital nutrients.”
Caveness said she once heard the disease described “… as like breathing through a straw. I’m hosting a little girl at my house right now and she has a lung function of 28 percent. The thing is, these kids are amazing. They never complain and they see each day as a gift because they don’t take life for granted like most of do.”
She explained the disease is genetic and can only be contracted if both parents have the gene.
“It’s a malformation of a protein and both parents have to have it for a child to have it. They do test for it in in prenatal screenings – now – but they didn’t start testing for it until the early 2000s,” she said.
As the conversation continued, Caveness said within the last four years the CFF has achieved some very notable milestones.
“In the last four years we have launched two drugs. One completely removes all of the underlying symptoms of CF. The patients just have to take the medicine daily. That particular drug affected a very, very small portion of the CF community but it is a cure for a small part of the CF population,” she said.
“The other drug was launched two years ago that affected a much larger CF population that helps treat the underlying symptoms, but it doesn’t take them away completely. I would say we will definitely see a cure for this disease in our lifetime, for all forms of cystic fibrosis,” Caveness indicated.
She added her work with the CFF is completely voluntary and “… it’s my fun job that I don’t get paid for. I’ve been with them so long, they are like family to me.”
While it used to be considered a fatal, childhood disease, Caveness said the median age for people with cystic fibrosis is now much older.
“When I was little, I remember my mom telling me Tiffany would only live to be 12 years old. She lived to be 19. Now, the median age is over 40. You have a lot of people who weren’t planning on growing up now living full lives. I’ve seen it go from a childhood disease to the development of an entire program for adult care,” she said.
“Winning this award was probably one of the greatest achievements of my life,” she added. “I don’t think that there is anything that I could do – work related – that could nearly as fulfilling. It is truly my passion. Completely. It also means what I’m doing is making a difference and Tiffany’s memory will live on forever. That’s what friendship is all about,” she said.
To learn more about cystic fibrosis or to donate to the Cystic Fibrosis Foundation, please contact the organization at:
50 Briar Hollow Ln. Suite 250 East
Houston, TX 77027 Phone: 713-621-0006
Executive Director: Sissy Boyd
Caveness will be participating in the upcoming Great Strides walk to help raise awareness and support for people with CF and their families. Donations can be made my email, phone or mail to “Team Tiff” c/o the Cystic Fibrosis Foundation Gulf Coast.
Will Johnson may be contacted via e-mail at firstname.lastname@example.org.