Cystic fibrosis (or CF) is a chronic, genetic disease that affects an estimated 30,000 lives in the United States alone. The condition manifests itself when a defective gene and its defective protein cause the body to produce mucus that is abnormally sticky and thick. Without treatment, the mucus can potentially clog the patient’s lungs, leading to life-threatening lung infections while also obstructing the pancreas and preventing pancreatic enzymes from effectively breaking down food.
The great news is that CF patients have benefited from fantastic treatment advances over the last half century. In the 1950’s children diagnosed with CF often did not survive long enough to attend elementary school. The average life expectancy of a CF patient in the US is 47 years. And, while this is a huge improvement, it’s not enough!
It is the mission of Alabama Friends of Cystic Fibrosis to generously support lifesaving research as we all fight for the cure we know is possible.
How do we know it’s possible? Because the advances keep coming. In 2012, CF families around the country celebrated as Kalydeco (ivecaftor) hit the market. Kalydeco is the first drug ever capable of treating the genetic cause of CF. However it is only effective in 4 to 5% of all CF patients.
So, we will still fight!
Blow Away 5K was started in 2010 by 3 families in the Trussville area with children with cystic fibrosis. Out of the 9 children in the three families, 6 children have the disease. Seeing the treatments and physical therapies the children must endure to stay healthy, and knowing of many drugs and therapies in the pipeline, the families decided to come together and start a 5K road race to benefit CF. Each year the race has grown which allows more and more money to be used to further research and bring new therapies to market to help those living with the disease.
Later on, these three families founded the Alabama Friends of Cystic Fibrosis.
The Alabama Friends of Cystic Fibrosis is a 501c3 approved non-profit organization. EIN: 462979959.
Donation to Children’s Hospital
Donation to Children’s Hospital
Donation to Children’s Hospital
Donation to UAB adult clinic
Donation to the Cystic Fibrosis Foundation 2016
Donation to the Cystic Fibrosis Foundation 2016
Donation to the Cystic Fibrosis Foundation 2017
Board of Directors
Meet Our Team!
Jonathan Ryer
President
Jonathan is the proud Father of two teens with CF. He is also fortunate enough to be married to his beautiful wife Debbie. They have never let CF define their family. Sure, there are challenges associated with raising children with CF, but they have never let CF stop them. They continue to fight and push for a better tomorrow, not just for their children, but for all CF patients. Help them make the future of all people with CF Cough Free.
Barbara Harden
Vice President
Barbara has lived in Alabama all her life and is pleased to call Alabama home. She graduated from the University of Alabama at Birmingham School of Business in 1991. She considers it an amazing privilege to be a wife, a mom, a daughter, a sister, a home school teacher and a friend. Barbara has a desire to help others by living out the Golden Rule of treating people the way she wants to be treated. Her friendships with CF patients and their families inspire her in the fight against CF. Most days you can find Barbara hanging out with her family, enjoying time with friends, running, cooking and acting younger than her age.
Linda Oare
Treasurer
Linda is the treasurer of Alabama Friends of Cystic Fibrosis. Her primary responsibilities are to oversee and report the organization’s finances. She is passionate about finding a cure for cystic fibrosis. She has a wonderful husband and three very active children. Her oldest son Eric has CF. He was diagnosed with CF at two weeks old and is now in college. She loves to travel with family, walk with friends, and is currently trying to learn the game of golf. Her favorite quote is ``Thirty minutes of wonderful is better than a lifetime of nothing special.``
Debbie Ryer
Secretary
Debbie is the mother of two teenagers with cystic fibrosis. Seeing what a person with CF has to go through everyday has given her a heart for helping others with special needs. She is inspired by her children as well as the many people she has met that strive to make the most of life regardless of their circumstances. In her spare time, Debbie likes to ride horses, go for walks, and spend time with her family. Debbie wants to help find a cure for the people that battle CF daily.
Dr. Lynn Stover Nichols
Board of Director
Lynn has been a pediatric nurse for over 25 years. Her first job was at Children’s Hospital of Alabama where she worked with adolescent in-patients and took care of many cystic fibrosis patients and their families. Throughout her career, she has seen many positive advances in the diagnosis and treatment of cystic fibrosis, but would like to see research find a cure. She is a faculty member at the University of Alabama at Birmingham School of Nursing and teaches a clinical course for senior nursing students at Children’s Hospital of Alabama. She ran the Blow Away 5K for the first time in 2016 and was inspired to become a Board member following the race so that she can impact fundraising efforts for cystic fibrosis.
Dr. Viktoria Havasi
Board Member
CF scientist by day and Latin dancer by night, Viktoria, a Hungarian native, has been living and working in Birmingham, AL since 2006. She was recruited into the Foundation by another CF scientist, Michelle McClure, while they were both working at the UAB CF Research Center. Viktoria felt that she could help the CF community not only by her scientific work, but also by volunteering for our charity. She has been attending board meetings and helping the AFCF since 2013. She has set up the Foundation’s Razoo.com fundraising page, manages the Facebook page and handles Blow Away 5k race registrations. When she is not busy working in the lab or volunteering, she spends her time Latin dancing or going on outdoor trips with her wiener dog, Layla.
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