Cystic Fibrosis (CF) is one of the most common genetic (inherited) diseases in America. It is also one of the most serious. It mainly affects the lungs and the digestive systems in the body, causing breathing problems and problems digesting foods. It is a chronic disease that currently has no cure.
The CF Center at Stanford is an integrated disease management program that follows patients from diagnosis through adulthood.
With the current longer life expectancy for patients with Cystic Fibrosis, our clinic population includes patients of all ages. More than half the patients followed by the Stanford CF Center are adults aged 18 years or older.
Each year the Department recognizes an outstanding staff member who contributed to team performance by providing encouragement and support, helped others overcome obstacles, and successfully accomplished goals; was an honest and dependable team player who contributed to group collaboration and consensual decision making and showed empathy and respect for others; and who built and maintained good working relationships.
Maya Melendrez was the winner of the Collaboration Award from the Department of Pediatrics. She is a very dedicated member of our team and this award was well deserved.
Honored for Cystic Fibrosis Professional of the Year
Meg Dvorak, Licensed Clinical Social Worker in the Cystic Fibrosis Clinic at Stanford Healthcare, was recently honored at the Cystic Fibrosis Research Institute's annual conference as the Cystic Fibrosis Professional of the Year. Meg was selected from a nationwide group of nominees. This award has previously been given to physicians and scholars, and Meg is the first social wworker to receive this honor. Meg has been a passionate and tireless advocate on behalf of patients and families receiving care at the Cystic Fibrosis Clinic, and for that she has been acknowledged for her work on a national level.
2014 Caregiver of the Year
Dr. Carlos Milla
CF Center Director at
Lucile Packard Children's Hospital Stanford
Dr. Carlos Milla, Director of the Pediatric Cystic Fibrosis Center at Lucile Packard Children’s Hospital Stanford was honored as CFRI's Caregiver of the Year at their spectacular Wine for a Cure event on October 19th. CFRI recognized Dr. Milla for the exceptional care he provides to his patients, his active involvement in CF-related clinical trials, his support of family-centered care in the CF Center, and his expansion of care and support to the Spanish-speaking CF community. Congratulations to Dr. Milla!
300 Pasteur Drive, 1st Floor, A175
For New Appointments, call CF Coordinator:
Adult routine appointments
Please call: (650)736-5400
News from the Adult Clinic
Letter from Stanford Adult Team regarding ORKAMBI More
July 13, 2015
As you may already know, Vertex Pharmaceuticals Incorporated has announced that ORKAMBI has been approved by the US Food and Drug Administration.
ORKAMBI is the newest prescription medication used for the treatment of Cystic Fibrosis patients age 12 years and older and is targeted towards those who have two copies of the F508del mutation in their CFTR gene. This medication is a combination of Ivacaftor and lumacaftor, and is dispensed in pill form.
The Stanford Adult CF Team is excited about the availability this medication which has shown good promise in decreasing CF exacerbations, and increase in lung function.
We are working now to determine those of our adult patients who qualify to receive ORKAMBI. We will be happy to discuss this with you at your next clinic visit.
Be advised, if you are eligible for ORKAMBI, you will be required to have a baseline Liver Function test, as well as baseline Spirometry prior to start of drug. All insurance companies have advised us we will need to submit proof of your genetic mutation, and may in some cases; also require results of your Sweat Chloride. We recognize that for some of you, you may no longer have copies of this, and we are prepared to schedule a repeat Sweat Chloride and/or Genetic Mutation for you if necessary.
Please be patient with us as we work diligently to determine your eligibility for ORKAMBI, and we appreciate your patience as we move forward on this process together.
The Stanford Adult Cystic Fibrosis Team
770 Welch Road, Suite 380, 3rd floor
Monday, Tuesday, Wednesday, Friday
For new Pediatric Patients
call: Erica (650)498-2655
Pediatric routine appointments
Please call: (650)724-4788
Nurse Coordinators/Clinic Nurse:
Please call: (650)736-1359
Bone Density (DEXA) (650)723-6855
PFT (full PFT's) (650) 497-8655
Emeryville, Pediatric Clinic
Emeryville, Pediatric Clinic
6121 Hollis Street, Emeryville
For all appointments, please call the nurse coordinator:
Cystic Fibrosis Research
Research is being conducted on the cause, biological mechanisms, new and better form of therapy and, ultimately, the cure for CF is an important part of our CF Center activities. You can be an important part of that research!
Research Participation: A Families Perspective
Richard and Rohini along with their rambunctious one-year-old daughter Ria live in Palo Alto, CA. Richard is originally from Belfast, Northern Ireland and Rohini is from Topeka, Kansas. Work brought them to the Bay Area and now they cannot imagine living anywhere else. On any given weekend you can find this family hiking the Dish, picking up goodies at the local farmers market, or running around Stanford.
Learning of Ria's condition through the newborn testing process Rohini and Richard experienced a whole variety of emotions from confusion to disbelief to anger and eventual acceptance. They are forever grateful to their family, friends, care team at Stanford, and pediatrician for their love, support, and patience.
Questions and Answers regarding the Research Process
1. How did you hear about the study?
Our incredible care team including Jackie Zirbes, Julie Matel, and Zach Sellers all introduced us to this opportunity
2. What were your concerns regarding enrolling your child in a study?
Our primary concern was the potential side effects that our daughter may face. It was a matter of understanding the anticipated benefits versus potential risks that helped us to decide to participate in this study.
3. What would you share with parents of young children who are considering enrolling their child in a study?
No question is too small or insignificant, ask every question that comes to mind. It can be directly or even peripherally related to the study, all of your questions matter. And my experience is that the team welcomes any and all questions at any time of day or night.
4. How would you describe your research experience?
Emotional. There have been some high highs as we see her stats improve but there have also been some low lows while we try to calm our nearly inconsolable daughter during blood draws. We would not have been able to get through those low moments without the support of our friends, family, pediatrician, trial care team, and clinic care team. We feel incredibly grateful for this opportunity and are hopeful that our daughter will be an even stronger, smarter, sassier version of herself at the end of it.
SAVE THE DATE
March 10th, 2018