Friday, February 26, 2010
Thursday, February 25, 2010
On Nov 16th I had the pleasure of interviewing Jan White she is truly amazing and a hero to so many. I am so glad I had this opportunity to get to know her she inspires me in so many ways...
Janice White, or Jan to those that know her best, is a 48-year-old woman living with the chronic illness, cystic fibrosis (CF), a disease in which the median lifespan is 37 years. Through her selfless service to others and enduring positive outlook and attitude, Jan inspires all those whose lives she touches. We recently talked to Jan to learn a little bit more about this amazing Hero of Hope.
Jan, what are some interesting things about you?
I have a Masters of Education in Speech Language Pathology and have worked for many years in this field, including with people who suffer from brain injuries and with the elderly living in long-term care facilities. Due to infection control issues, I no longer work with patients and now work for the state of North Carolina, where I help ensure that governmental policies are going to best benefit these patient populations.
Can you tell us a little bit about your experience with CF?
In terms of CF, my story is actually very different than most as I was not diagnosed until I was nine years old. My older sister was misdiagnosed for three years, and her eventual diagnosis became the catalyst for my being tested. Sadly, she passed away at the age of 17. None of my three older siblings have CF, though one of my brothers is a carrier.
In 2003, a new chapter opened up for me and I received a life-changing double lung transplant. In January, I will celebrate my seventh anniversary with my lungs!
How has your CF health routine changed since your transplant?
Before my transplant, a typical day included nebulizer treatments and chest percussive therapies multiple times a day, many medications and an exercise regimen. Since the transplant, I still focus on being compliant to my health routine, but the improvement in my health has allowed me to make some adjustments. I now take daily transplant medications and maintain my exercise program, which is a big part of my life. I work out at the gym regularly, but I also like to take walks with my dogs to keep exercise fun. Listening to my body and my doctor is also imperative, and I take the time for rest and relaxation when needed.
Your service to others is exceptional. Please tell us about some of the organizations you are involved in.
I work with the Carolina Donor Services, a procurement agency on the east coast, and the Sweet Melissa Fund, an organization at the University of North Carolina which raises money for transplant patients. I also help with fundraising for the Brain Injury Association of North Carolina, and lately have become active with the Amyotrophic Lateral Sclerosis (ALS) Association, an organization dear to my heart as a close friend was recently diagnosed.
With a full workload, social life and the need to take care of your own health, how do you find the time to squeeze everything in?
As a post-transplant patient, it is very important for me to give back to the CF community and to other people in need. Now that I have the energy, I want to use it to help those that don't have the same luxury.
What is the motto you live by?
When my sister passed away, I was in the hospital chapel where a placard on the wall read, "Never put a question mark where God has put a period." Those words resonated with me, and ever since then I try not to question what I have been given. It's not always easy, but it is a good form to work toward.
Wednesday, February 24, 2010
Tuesday, February 23, 2010
CF Foundation Plays Important Role in Bringing New Inhaled Antibiotic Cayston® to Patients
February 22, 2010
I have been on Aztreonam now since about June of 08 I was part of the early release program and I ABSOLUTELY love it! It's nebulized 3x a day with the E flow and takes about 3 min. You do it on your off months from TOBI. I really feel like it's made a difference in my life and I am excited for it to help the rest of you!
U.S. Food and Drug Administration approved an important new inhaled antibiotic called Cayston® (aztreonam for inhalation solution) today for the treatment of cystic fibrosis (CF). The drug was made possible by significant support from the Cystic Fibrosis Foundation, including a $1 million investment by a Foundation subsidiary to help develop the therapy.
Developed by Gilead Sciences, Inc., Cayston offers a much-needed antibiotic alternative for CF patients who battle recurrent lung infections and develop resistance to existing antibiotics. Lung infections are the leading cause of death in CF.
Cayston is the first CF drug to advance — from beginning to end — through the Cystic Fibrosis Foundation’s Therapeutics Development Program, which is designed to speed the creation of new CF therapies. In addition, Cystic Fibrosis Services, Inc, a wholly owned subsidiary of the Foundation, will be one of only several pharmacies in the country distributing the drug.
Cayston will be available by the end of next week.
“The approval of Cayston demonstrates that our drug development model is working and making a real difference in the lives of people with cystic fibrosis,” said Robert J. Beall, Ph.D. president and CEO of the Cystic Fibrosis Foundation. “We are delighted to have a new antibiotic in the arsenal to help fight the life-threatening infections associated with this disease, as we continue to push forward with other therapies that address the underlying cause of CF.”
The Foundation supported Cayston at each stage of development, from providing an initial therapeutics development award, to making the Foundation’s clinical trials network available to test the drug in patients, to advocating with the FDA for the drug’s approval.
“The Cystic Fibrosis Foundation’s early funding and ongoing support for Cayston played an important role in bringing this new therapy to patients,” said Bruce Montgomery, M.D., senior vice president, head of Respiratory Therapeutics, Gilead Sciences. “We are thrilled to help meet an urgent medical need for CF patients, and to support the Foundation’s mission to improve the lives of people with this terrible disease.”
Cayston is administered with a new device called Altera that allows patients to take the medicine in less than five minutes, a fraction of the time required for other inhaled antibiotics. This shortened delivery time reduces the burden on patients, who — on average — have a treatment regimen of three to four hours per day.
Patients interested in learning more about Cayston should consult their physicians.
Monday, February 22, 2010
Saturday, February 20, 2010
Thursday, February 18, 2010
Wednesday, February 17, 2010
Tuesday, February 16, 2010
Friday, February 12, 2010
Wednesday, February 10, 2010
Tuesday, February 9, 2010
Monday, February 8, 2010
- 22.Well I am off to find my "purpose" ;)