Dear CF Families,
As you are probably well aware, we are experiencing very challenging and unprecedented times with the COVID-19 pandemic. Unfortunately there is no vaccine available yet for this virus, though there are significant ongoing efforts worldwide in this regard. This means for now our best strategy continues to be focused on prevention through the infection control precautions that you are already very familiar with. Fortunately, we have not seen a sigificant impact in our CF population. In great part we believe this is because the CF community at large is already highly cognizant of the value of infection control measures and continues to lead by being a model to others.
We are also aware that the somewhat protracted pandemic and rising cases in our region are causing significant concern and posing many questions to all our CF Families and the CF community. As there are many unknowns and every County is experiencing different circumstances, the answers to these important questions are not a one size fits all. Your provider can help answer these questions by evaluating your childs health history and the local restrictions imposed by your county. It will be best to bring your questions and concerns to your child's provider and have these discussions within the context of your specific circumstances. In addition we encourage you to review the information available through trusted sources such as Stanford Medicine (https://medstanford.edu/covid19.html), The CF Foundation (https://www.cff.org/Life-With-CF/Daily-Life/Germs-and-Staying-Healthy/CF-and-Coronavirus/COVID-19-Community-Questions-and-Answers/) and the Centers for Disease Control and Prevention (https://www.cdc.gov/coronavirus/2019-ncov/index.html). Not only the information is carefully curated for its accuracy but its also updated frequently.
Please feel free to send a Mychart message to your provider or call the CF RN phone line and we will do our best to guide you in making the decision that feels right for you, your child and your family.
Please also give us a call if you think your child has come down with an acute respiratory infection. Symptoms of the coronavirus infection can be confused with the flu or a cold and include fever, chills, body aches, headache, vomiting poor appetite, loss of taste or smell, and/or increased or new respiratory symptoms.
Once again, if your child does fall sick with a flu like illness, please contact your nurse coordinator immediately for advice and keep your child home to prevent spreading infection to others.
With warm regards,
Carlos Milla, MD Mary Helmers, RN, BSN
Professor and Director, Cystic Fibrosis Nurse Coordinator
The Stanford Cystic Firbrosis Center Lucile Packard Children's Hospital at Stanford
Stanford Julio 7 2020
Querida familia FQ,
Como probablemente usted esta enterado, estamos viviendo momentos muy difíciles y sin precedentes con la pandemia COVID-19. Desafortunadamente, todavía no hay vacuna disponible para este virus, aunque hay importantes esfuerzos en curso a nivel mundial para su desarrollo. Esto significa que por ahora nuestra mejor estrategia continúa centrándose en la prevención a través de las precauciones de control de infecciones con las que ya está muy familiarizado. Afortunadamente, no hemos visto un impacto significativo en nuestra población de FQ. En gran parte creemos que esto se debe a que la comunidad de FQ en general es muy consciente del valor de las medidas de control de infecciones y sigue liderando como un modelo para los demás.
También somos conscientes de que la pandemia un tanto prolongada y el aumento de los casos en nuestra región están causando una preocupación significativa y planteando muchas preguntas a todas nuestras familias FQ y a la comunidad FQ. Como todavía hay muchas incógnitas y cada condado está experimentando diferentes circunstancias, las respuestas a estas preguntas importantes no son comunes para todos. Su profesional de salud especialista de FQ puede ayudar a responder estas preguntas evaluando el historial de salud de su niño y las restricciones locales impuestas por su condado. Por eso es lo mejor llevar sus preguntas e inquietudes al especialista de su niño y tener estas discusiones dentro del contexto de sus circunstancias específicas. Además, le recomendamos que revise la información disponible a través de fuentes de confianza como Stanford Medicine (https://med.stanford.edu/covid19.html),The CF Foundation (https://www.cff.org/Life-With-CF/Daily-Life/Germs-and-Staying-Healthy/CF-and-Coronavirus/COVID-19-Community-Questions-and-Answers/)y el Centro para el Control y la Prevención de Enfermedades (https://www.cdc.gov/coronavirus/2019-ncov/index.html). No sólo la información se revisa cuidadosamente en su contenido, sino que también se actualiza con frecuencia.
Por favor, no dude en enviar un mensaje de MyChart a su especiaista o llame a la línea telefónica CF RN y haremos todo lo posible para guiarlo en la toma de decisiones con las que se sienta bien usted, su niño y su familia.
Por favor, también llámenos si cree que su niño ha caído con una infección respiratoria aguda. Los síntomas de la infección por coronavirus pueden confundirse con la gripe o un resfriado e incluyen fiebre, escalofríos, dolores corporales, dolor de cabeza, vómitos, falta de apetito, pérdida de sabor u olor, y/o aumento o nuevos síntomas respiratorios.
Una vez más, si su niño se enferma con una enfermedad similar a la gripe, comuníquese inmediatamente con su enfermera coordinadora de FQ para obtener consejos y mantenga a su niño en casa para evitar la propagación de la infección a otras personas.
Carlos E. Milla, MD Mary Helmers, RN, BSN
Professor and Director, Cystic Fibrosis Nurse Coordinator
The Stanford Cystic Fibrosis Center Lucile Packard Children’s Hospital at Stanford
Articles and Information on COVID-19
Information on coronavirus from the American Thoracic Society
The CFF's community Q&A
Updated Guidance on COVID-19 for the CF Community from the CFF
Protect yourself from COVID-19
Upcoming virtual event from the CFF-Virtual Great Strides-Let's all get active in our neighborhoods, on your treadmill or spinning on your stationary bike while maintinaing our social distance!!
There's a lot of things being said about COVID-19. Here's some frequently asked questions and answers from Stanford Medicine!
Want to participate in Stanford COVID-19 research from your own home? Stanford researchers from the Department of Epidemiology and Population Health are studying the impact of COVID-19 in the community in this survey. The CF Community is our community so it would be great to include your perspective in the study!
While we don't have active COVID-19 research studies in our patients with CF, Stanford researchers are hard at work trying to understand COVID-19!
"Listen to Stanford's own Dr. Rick Moss discuss the current COVID-19 pandemic and what it means for patients with CF!"
Dear CF Family,
As you are probably well aware, epidemics of respiratory viruses, particularly “the flu”, occur every year. This year’s viral season in the U.S. and California has already followed a typical pattern, though it seems the protection from the influenza vaccine (“flu shot”) is not as complete. However, you are also probably already aware through the news of an epidemic of respiratory illness in China with a novel virus that belongs to the coronavirus group and has been named COVID-19. This particular virus seems highly contagious and after reaching epidemic proportions in China, has emerged worldwide. This situation has been watched closely by multiple agencies including the Centers for Disease Control (CDC) and the California State Department of Public Health. Today the CDC has announced that it considers the virus to be circulating in Northern California. This means that it is present in the community and not anymore just being carried by travelers. At the Stanford CF Center we take this quite seriously and are certainly joining in preparation efforts, as at this time it is unpredictable to what degree this will become a widespread problem.
Unfortunately there is no vaccine or therapy available for this virus, though there are significant ongoing efforts in this regard. This means for now our best strategy is prevention. Viruses primarily transmit by secretions emitted by sick individuals. Contact with contaminated surfaces then introduces the virus, primarily by touching infected materials and surfaces and bringing them into contact with nose, eyes or mouth. It is therefore of great importance to follow the infection control precautions that you are familiar with through our clinic, starting with washing (or sanitizing) your hands frequently to reduce the spread of germs. It is also common sense to take the additional precautions of refraining from contact with sick people and avoiding crowded places.
Please also give us a call if you think your child has come down with an acute respiratory infection. Symptoms of the coronavirus infection can be confused with the flu or a cold and include fever, chills, body aches, headache, vomiting, poor appetite and/or increased or new respiratory symptoms.
If your child has not received a flu shot yet, please do so as soon as possible since there is no downside in getting it late and it is still providing protection for some of the circulating viruses. Once again, if your child does fall sick with a flu like illness, please contact your nurse coordinator immediately for advice and keep your child home from school to prevent spreading infection to others.
With warm regards,
Carlos E. Milla, MD
Professor and Director,
The Stanford Cystic Fibrosis Center
Approval of the new drug Trikafta
October 22, 2019
Dear Patients and Families,
We hope this letter finds everyone well and enjoying a good Fall. As you may already be aware, the FDA approved yesterday the drug Trikafta (a triple combination of the CFTR modulators Elexacaftor, Tezacaftor and Ivacaftor) for the treatment of CF patients 12 years of age and older who carry at least one delta F508 mutation in their CF genes. The approval was based on the impressive effects noted in patients that participated in the clinical trials that evaluated the drug. This represents a significant advancement in CF care, since close to 90% of CF patients carry at least one copy of delta F508 mutation. This expands substantially our ability to offer to CF patients access to highly effective CFTR modulator therapy. At the same time, we recognize the importance of continued research for the remaining 10% of CF patients who may not have access to this type of therapy and remain committed to meaningfully contribute to ongoing research efforts in this regard.
At the Stanford Cystic Fibrosis Center, we have compiled a list of patients who qualify for the new modulator therapy. We are working closely with the manufacturer and specialty pharmacy teams to determine first availability of Trikafta for those that qualify. We will be reaching out to those patients and families on an individual basis to discuss the new treatment option and plan start of therapy.
Please always keep in mind that in our model of care, you are the most important member of the care team. We value very much the trust you placed on us and hope to continue building on the partnership that is established through our Center to serve you and the CF community at large. If you have any qeustions or concerns, please do not hesitate to call the RN phone line at 650-736-1359.
With best regards,
Dr. Carlos Milla
The Stanford Cystic Fibrosis Center
Stanford Children's Health
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.
770 Welch Road, Suite 380, 3rd Floor
Monday, Tuesday, Wednesday, Friday
For New Pediatric Patients
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
CF Education Day
Due to county restrictions that are in place regarding COVID-19 and in the interest of protecting the health and wellbeing of the CF community, we have decided to Indefinitely Postpone our 2020 CF education day.
Pediatric Clinic News
Make sure you bring your CF Passport with you! Use the PASSPORT around the hospital wherever you have an appointment, test, or procedure. Remember Parents/Patients to carry your child's CF PASSPORT in your wallet. If for some reason you do not have one or tossed it, please ask for one at your next clinic visit. We now have them in English and Spanish
Have A Question?
Do you drive away from clinic thinking, "oh no, I forgot to ask a question?" You can now fill out this form ahead of time and bring it to your clinic appointment. This form is designed to help you get all your questions answered. This is not mandatory, but a tool to assist you in jogging your memory in preparation for your clinic visit.
Did you know that you can get assistance with your PG&E bill? All you need to do is visit the website, print and complete the form with all your medical devices listed. Then bring your form to your next CF clinic visit, and your provider will sign it. Finally, mail the completed form to PG&E.
CF and Dental Health
Oral hygiene (caring for your teeth and gums) can impact CF health. Here are some guidelines and tips for how to teach and encourage your children to practice good habits to stay happy and healthy.
Adult Clinic News
Adult Support Group
CF Caregivers Support Group
A CFRI CF Quality of Life Program
Group Meets Third Tuesday of Every Month.
Two Groups to Choose from:
Parents of children with CF: 5:00 pm - 6:00 pm PST
Parents/Spouses/Partners of Adults with CF: 6:00 pm - 7:00 pm PST
Location: 1st Floor Conference Room, 730 Welch Road, Palo Alto, CA
or Participate by Phone: 1-650-736-4444
Facilitated by Meg Dvorak, LCSW
For more information about this program or other CF Quality of LIfe programs, please call CFRI at 650-665-7576
Herbs and Oils: Applications in CF, Russell Wise, PharmD, BCPPS
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.