Family to Family

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Who We Are

We formed our Cystic Fibrosis Family Advisory Council in September of 2008 in accordance with guidelines of the CF Foundation and Nemours to promote family centered care. We are fortunate to have a terrific CF Care Team with whom we work to improve all aspects of our children's care. A few examples of how we have partnered with Team to do that are: streamlining PICC line admissions and procedures; having bloodwork done in clinic to save time and travel and promote infection control; participated in the design and construction of and publicity surrounding the Expansion; served on many hospital committees relating to infection control, outpatient lab, palliative care, website design, new unit for short term stay patients, hiring of certain Nemours personnel, PFT lab, physical therapy and more.


We are always looking for ways to improve the quality of care and quality of life of our children with CF and our families. We always welcome ideas from both patients and families. Please contact us or Kathi Peeke with any ideas you would like us to pursue.

Upcoming Parent Event: CF Through the School Years

Our group will be hosting another roundtable event this spring on Sunday, May 3 from 1:00 until 3:00 p.m. at the Hospital. The topic will be School Transitions for those with cystic fibrosis, focusing on transitions from elementary to middle school, middle school to high school, and high school to college. We expect to incorporate views from both patients and parents giving tips on how to ease what can be challenging transitions for families and individuals. Look for more information coming soon.


This event will work best if you tell us what you want panelists to discuss and what you want to talk about based on your experiences. We don't have enough opportunities to talk to other local CF parents face to face like this. We look forward to hearing from you and seeing you. To submit questions for our panelists, you can use the Google doc at this link, https://docs.google.com/document/d/11oX7-Tc-MxfoupEdGdp5b3usEwYvv1x1FgT0Cmf8aYk/edit or you can message us on Facebook, email us, use the Comment section of the newsletter at the bottom of this page, or contact Kathi Peeke. Thanks!

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Meeting Schedule

Our group meets almost every month, alternating meetings in the hospital with meetings at Panera in Fairfax. If you are interested in attending a meeting, please contact Bethann Deveney at pencf@aol.com. We'd love to meet you.

How can we improve our children's hospital stays?

Do you have any ideas on how to improve your child's inpatient stay? We know that our children often feel imprisoned while in the hospital, despite the beauty of the new rooms. They cannot leave the room to enjoy the many sunny spots around the hospital and those who enter their room are gowned and gloved from head to toe, adding to the feeling of isolation even though it is for the child's protection.


Your children can share their thoughts with us, with the CF Team and with the hospital's Youth Advisory Council (http://www.nemours.org/service/support/naidhcsupport/advcouncils/yac.html), another group that was actively involved in the design of the Expansion.


Think about what can be brought to the room to brighten a child/teen's day. This article describes one idea: http://www.kpbs.org/news/2015/jan/28/maker-space-allows-kids-to-innovate-learn-in-the/ Would an exercise bike or treadmill be appealing? A Wii Fit or similar device? A staff member who can do massage, yoga or other stress relieving exercises with the patient (not to mention parents)? The hospital has some resources already but infection control guidelines sometimes limit what is available to our kids. Tell us what you think and how we can make a difficult time just a little better for your child and you. Use the Comment section at the bottom of the page, email us, message us on Facebook or contact us through Clinic staff.

Tell Nemours What You Think

Did you know that our hospital offers live family advisory councils like ours as well as virtual family advisory councils to allow patients and families more ways to communicate with Nemours? Jim, Burrows, Director of Service Excellence at our hospital, created these online Yammer groups especially for families who have trouble attending meetings at the hospital. The Nemours Virtual Advisory Council (VAC) is an online community of current and former patient family members. The purpose of the VAC is to give people the opportunity to help Nemours improve, whenever and wherever they are by removing time and physical location barriers. No longer do our families need to attend meetings in person, or be available between the hours of 8 am and 5 pm. Because the VAC is open 24 hours/7 days a week, families can help us whenever they want or are able to help. There are no minimum participation requirement and registration is easy. Simply send an email to virtualadvisorycouncil@nemours.org with a little history of your experience with Nemours, receive an online invitation, pick a user name and password, then start helping. See https://www.yammer.com/nemoursvirtualadvisorycouncil/#/threads/company?type=general. You can comment on issues that are specific to cystic fibrosis, those that affect all or many conditions, or those specific to another condition. Based on our experience with both the hospital wide Family Advisory Council and the Cystic Fibrosis Family Advisory Council, we can tell you that your voice will be heard by Nemours staff at all levels, administrative and direct care providers. This is a great opportunity for all families and kids to speak up on issues that matter to them. We also have a Yammer group specific to cystic fibrosis, moderated by Kim York. See https://www.yammer.com/aidupontcfvirtualadvisorycouncil/#/Threads/index?type=my_all
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Luncheon on January 29, 2015

Every year our CF Care Team has a luncheon following the annual North American Cystic Fibrosis Conference so that the staff can share what they learned with each other. The Team invites members of our CF FAC to attend as well.


At this year's conference, several of our team members presented posters and spoke to large groups of CF medical professionals. Our Clinic may be small but we have a lot of creative and hardworking folks in it.


Michelle Reed, RD, SCP, LDN, presented on how she and the team are utilizing social media in our clinic. As you may recall, Michelle surveyed patients of middle school age and older and their caregivers about how they use social media in the spring and summer of 2014. While adults prefer Facebook and Pinterest, children prefer Instagram and Facebook, in that order. Parents use social media more often than children to share and connect with other CF families. Michelle's detailed findings confirmed that the Clinic should be using social media to connect with families and patients and that Facebook is a good way to do that. She was also able to determine what kinds of information families want and the Clinic continues to seek and find innovate ways to share that information through social media. If you haven't already, check out http://www.facebook.com/groups/CFprogram (the page for The Cystic Fibrosis Program at Nemours/Alfred I. duPont Hospital for Children) or talk to Michelle about these efforts. And while you're there, join our private group at https://www.facebook.com/groups/CFFAC/.


Dawn Selhorst, RT, presented information on some new airway clearance (ACT) options. As usual, Dawn is on the cutting edge of this technology and in front advocating for her patients. She studied and tried on the Afflo Vest (http://www.afflovest.com/) The concept of a vibrating vest that does not have to be connected to large, heavy, stationary machine appeals to many. The drawbacks to this vest include issues with insurance coverage (it will only be replaced every 5 years so it's not a good match for growing child) and the $300 non-covered cost of replacing the battery. Other companies are working on similar vests and this technology may be more easily accessible soon.


Dawn also described the Vibralung (http://westmedinc.com/vibralung/), a device that works using sound frequencies and was originally tested on horses. This may be an option that some patients want to add to their regimen though it would not replace other ACT methods at this point.


Dr. Shenoy gave a detailed presentation on the status of research into CFTR modulators, which fall into one of two categories, correctors and potentiators. Correctors are chemical compounds designed to move the defective CFTR protein to the right place in the membrane of airway cells and improve its ability to function as a chloride channel. See http://www.cff.org/treatments/Pipeline/ Potentiators are CFTR modulators that assist the opening of the chloride channel on the surface of the cell. Most patients will need a combination of these two compounds to address the underlying cause of their CF. However, the multitude of gene combinations means there is no one method, found to date, that will work for all those with CF. The CFF's website contains an interactive Drug Pipeline (link above) page that gives up to date information on all ongoing research with descriptions of the type of remedy being studied.


Kathi Peeke, APN, discussed the CF Foundation's ongoing creation of guidelines for treating those with CF from birth to age 6. The Foundation is soliciting comments on the proposed guidelines and our Clinic has provided some. Currently, there are not definitive guidelines for treatment of preschoolers but our Clinic has been doing many of the things recommended in the proposed guidelines already.


Kathi also presented on our Clinic's use of team rounding for patients who have CFRD which they have been doing twice weekly since 2013, and the family rounding our team does for all CF patients. Family rounding has become the standard at Nemours and is the trend nationally as it is an integral part of family centered care, involving the patient to the extent of their abilities and the family in all discussions about care.


Finally, Dr. Chidekel presented the findings from the CF Foundation on our clinic. The CFF surveys all accredited clinics annually and produces an analysis of all the data reflecting topics like BMI and FEV1 for selected age groups as well as on issues of compliance such as whether patients comply with CFF recommendations as to the number of annual visits, sputum cultures, CFRD testing, bloodwork, PFTs. The CFF also looks at rates of infection with certain bacteria among a clinic's patients as part of a way to promote infection control and to monitor those rates nationally. Because our clinic is relatively small, the statistics can be easily and sharply affected by a very small number of patients. Dr. Chidekel also emphasized that our clinic is scrupulous in reporting all raw data and in putting the best care of each individual patient ahead of any statistical goal. Overall, our Clinic has made great progress in improving the BMI of all patients and the compliance with care guidelines of all patients. We rank at or above the national average in almost every area. The CFF data are available at http://www.cff.org/LivingWithCF/CareCenterNetwork/CareCenterData/


We were thrilled to see President Obama recognize cystic fibrosis in his State of the Union address and to see how the Precision Medicine Initiative may help our families as well. We hope to see more FDA approvals of CF medicines later this year. While progress on finding a cure for cystic fibrosis cannot move fast enough, we are making progress, faster progress now than ever before. It is very exciting that our medical team and our families are a part of that progress.

Contact us

You can reach us in any of several ways. Email us directly at . Message us on Facebook to join our Facebook group at https://www.facebook.com/groups/CFFAC/ (Nemours duPont Cystic Fibrosis Family Advisory Council). Kathi Peeke or Kim York can connect you. Meet us at one of our roundtable events or at a Great Strides walk.
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