Dear Patients and Families,
Although we continue to be challenged with the protracted effects of the COVID-19 pandemic, we are entering into a new phase as vaccines have finally become available. As you may already be aware, supplies are limited and a staged approach to vaccination is being followed. You may also be aware that the approved vaccines are only for people older than age 16. We anticipate in the upcoming months the completion of clinical trials that will permit extending to younger age groups, though the timelines are unclear at this point in time. We wanted to let you know that that we are watching the situation very closely and following guidance from our organization at large, as there are several agencies involved in allocation and distribution plans. We also wanted to share with you an informational statement released by Stanford Health Care’s CEO, Mr David Entwistle, including providing you with a link were you could obtain the most updated information as to our vaccination plans, including eligibility status.
Fortunately, we continue to see that there the impact in our CF population remains very limited. 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. 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 provide information that will of help to you, your child and your family.
Please also give us a call if you think you or 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 Fibrosis Center Lucile Packard Children's Hospital at Stanford
Estimados pacientes y familias,
Aunque seguimos siendo desafiados por los efectos prolongados de la pandemia COVID-19, estamos entrando en una nueva fase a medida que las vacunas han llegado finalmente a estar disponibles. Como puede ya saber, los suministros son limitados y se está siguiendo un enfoque escalonado para la vacunación. También puede ya saber que las vacunas aprobadas son solo para personas mayores de 16 años. Anticipamos en los próximos meses la culminación de los ensayos clínicos que permitan extender a grupos de edad más jóvenes, aunque los plazos no están claros en este momento. Queríamos hacerle saber que estamos vigilando la situación muy de cerca y siguiendo la orientación de nuestra organización en general, ya que hay varias agencias involucradas en los planes de asignación y distribución. También queríamos compartir con usted una declaración informativa publicada por el CEO de Stanford Health Care, el Sr. David Entwistle, incluyendo un enlace en el que podrá obtener en la web la información más actualizada sobre nuestros planes de vacunación, incluido el estado de elegibilidad.
Afortunadamente, seguimos viendo que el impacto en nuestra población de FQ sigue siendo muy limitado. En gran parte creemos que esto se debe a que la comunidad FQ en general ya es muy consciente del valor de las medidas de control de infecciones y sigue liderando como un modelo para los demás. No dude en enviarnos sus dudas mediante un mensaje de Mychart a su proveedor o llame a la línea telefónica CF RN y haremos todo lo posible para proporcionar información que le ayudará a usted, a su hijo y a su familia.
Por favor, también llámenos si cree que usted o su hijo han 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 hijo se enferma con una enfermedad similar a la gripe, por favor póngase en contacto con su coordinador de enfermería inmediatamente para obtener consejos y mantener a su hijo en casa para evitar la propagación de la infección a otros.
Para informacion adicional: https://stanfordhealthcare.org/discover/covid-19-resource-center/patient-care/safety-health-vaccine-planning.html “
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!
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.