BENEFITING: Cystic Fibrosis Foundation
EVENT DATE: Jul 31, 2016
Ilana Arbisser wrote -
I am raising money for the Cystic Fibrosis Foundation for two of my best friends and the 30,000 other men and women living in the US with Cystic Fibrosis.
Cystic Fibrosis (CF) is a progressive, congenital disease that affects the balance of salts in the body, impeding the proper function of different organs, particularly the lungs, and seriously increasing the susceptibility to bacterial infection.
Before the 1950’s, most children with CF did not survive to see kindergarten. By the time my two friends were born in the late 80’s/early 90’s, the majority of CF patients did not live past their teenage years. Today, the median life expectancy is now 41, which is still too young.
Aviva has been my best friend since before preschool. As we enter our early 20’s, we face the usual fears and challenges of adulthood. For a person with Cystic Fibrosis, entering adulthood also means leaving pediatric care and entering a new world of treatment, much of which is still developing, because for so many decades Cystic Fibrosis was only a pediatric disease. This highlights the importance of not only developing new drugs, but also improving personalized care.
Aviva is incredibly caring. She loves to travel, even though traveling comes with the additional hassle of bringing her equipment for physical therapy, refrigerating her medication, sterilizing her equipment after every use to avoid any bacteria accumulating, potentially cancelling trips after coming down with an infection, and navigating a foreign health care system during longer stays. She’s also passionate about working for nonprofits and is a talented writer and community organizer. She has an important voice for change in this world. Hopefully research into better treatments of her symptoms will allow her to pursue her passions unfettered and improve her quality of life further.
Cystic Fibrosis affects individuals differently, and in many ways the disease is invisible to others. When I met Lily a few years ago and we started running together, I had no idea that she was living with CF. Now we're both running the San Francisco Marathon (her much faster than me, by the way) and hopefully raising money for a cause that is important to both of us. Lily is an incredible athlete, having previously completed a marathon and a triathlon, and competed on a top-ranked varsity college sports team. Even though she's capable of many physical feats far beyond the abilities of most people without Cystic Fibrosis, Lily still has symptoms of the disease and has to do treatments for her CF multiple times a day. She is one of the most intelligent and driven women that I know and yet, unforeseen complications from her disease could arise at any time.
Unfortunatey, due to the risk of infection between CF patients, these two women who are such a big part of my life have never met each other in person. There is a real hope that with continued research Lily and Aviva will see a cure for Cystic Fibrosis in their lifetimes. The Cystic Fibrosis Foundation (CFF) is an important part in making that happen. CFF funds research and clinical trials for Cystic Fibrosis treatments, and each year there are advancements that positively impact Lily and Aviva’s quality of life. Last year, clinical trials began for a new drug that has the potential to reduce symptoms from CF in more than half of the people who have the disease. We are hoping for a cure for all people with Cystic Fibrosis, and research on CF is as important now as ever.
The Cystic Fibrosis Foundation funds the life-saving research so desperately needed for this disease. The mission of the Cystic Fibrosis Foundation is to fund research towards developing drugs to treat the symptoms of CF, improving the treatment of patients, and hopefully, finding a cure. Lily and I are running the San Francisco Marathon and raising money for the Cystic Fibrosis Foundation. Please consider donating to our cause—even as little as $1 per mile, or $26.20.