Author Archive

May

CFFC Facebook Posts – May 2019 – Part 1

05/01/2019 – CF Awareness Lasts All Year - Yes, May is CF Awareness Month. The again, every day is CF awareness day. 05/02/2019 - CF-associated Bacteria and Fungi Affect Each Other’s Growth, According to In Vitro Study – Aside from the specific conditions covered by this study, the article reinforces the need to tailor treatments to each individual's circumstances. 05/03/2019 - Getting Comfortable with a New CF Clinic – You will probably face a new clinic environment at least once in your life, even if you stay in the same city. [Changes in clinic staff may even count as a “new” clinic.] Gunnar Esiaison describes his experiences and offers some advice on establishing relationships. 05/04/2019 - Community Voice Survey on Evolving Needs – In the spirit of CF Awareness Month, this survey provides an opportunity to make the CF Foundation aware of your greatest needs. 05/05/2019 - You can teach a dog (me) new tricks (insulin pump and CGM) – This blog entry has two sub-stories. One, technology won't solve your problems but it can ease the challenge. Two, you have to adapt technology to your particular circumstances. 05/06/2019 - Decreasing Acidity of Airway Liquid in Newborn CF Patients May Reduce Infection Risk, Study Suggests – Getting a head start on infection control should contribute to better long-term outcomes. 05/07/2019 - Why We Need to Stop Repressing Our Emotions – We know that emotional (mental) health is important to managing chronic disease. This blog talks about breaking stereotypes in order to build emotional health. 05/08/2019 - Research blast ...

May

Input Request: Advanced CF Lung Disease Guidelines

CF Foundation Community Voice has issued a call for public comment on the draft Advanced CF Lung Disease Guidelines. Here is their announcement: The CF Foundation would like your input on the draft of the Consensus Guidelines for the Care of Individuals with Advanced CF Lung Disease.A committee of CF health care providers, two adults with CF, and a parent of an individual with CF researched and developed the consensus recommendation statements presented in the draft. We hope that you will add your input and feedback to ensure that our community issues actionable practice recommendations for advanced CF lung disease.If you are interested in this opportunity, please review the Consensus Guidelines for the Care of Individuals with Advanced CF Lung Disease.   Please read the instructions that are listed on the first page of the survey and submit your comments using the button below by Thursday, May 23, 2019 at 5:00 p.m., ET. You will be able to provide feedback on each recommendation and have the opportunity to provide input on other sections as well. Click Here to Submit Comments We value your input. Thank you in advance for taking time to review and provide us with feedback on this important aspect of CF care.If you have any questions, please contact Sarah Hempstead at shempstead@cff.org.Sincerely,Albert Faro, Erin Tallarico, and Sarah HempsteadAlbert Faro, MDSenior Director of Clinical AffairsCystic Fibrosis FoundationErin Tallarico, RN, BSNDirector, Lung Transplant InitiativeCystic Fibrosis FoundationSarah Hempstead, MSClinical Practice Guidelines Sr. SpecialistCystic Fibrosis Foundation Please take the time to review the draft guidelines and submit your observations. Your perspective can help improve this product - and influence your future care.

May

Community Voice Survey on Evolving Needs

The Cystic Fibrosis Foundation, through the Community Voice initiative, has been expanding its interaction with people living with CF and their immediate support team. They have produced a survey to gather your input for setting the direction and priorities for community involvement. Here is their request for your help: We’re making progress each and every year on cystic fibrosis research, treatments, and care. And as research and care are changing, so too are the needs of the CF community. We want to hear from people with CF and their families and loved ones about how the Foundation can work to support and strengthen the CF community in light of these changes. We are asking people with CF and their families and loved ones to take a 15-minute survey to share your views on how the Foundation can work to support and strengthen the CF community. Your insights will inform our approach to meeting the evolving needs of people with CF over the next five years, and how we might work with others. To participate in the survey, please click the link below by Sunday, May 12, 2019 at 11:59 p.m., ET.For participating, you can be entered into a drawing to win a one of ten $10 Amazon gift cards. Take the Survey We will share key themes that emerge from this survey in the next few months. Please feel free to share this opportunity with others who might be interested in participating.   Thank you for your time and consideration. Best, The Community Voice Team     As a major national organization, the CF Foundation is able to develop support beyond the capacity we have locally. We encourage you to participate in the survey to point the Foundation in a direction of greatest benefit to you. NOTE: The survey recognizes the participants IP address, so you may have clean your browser history and cookies if more than one person in your household wants to complete the survey.

May

CF Awareness Lasts All Year

May has been designated as CF Awareness Month. You can expect to see increased publicity relating to CF this month but, in reality, increasing awareness - and understanding - of CF is a year round activity. Locally, we like the think of CFFC as a primary source of information on all aspects of CF. If you don't already, you can follow CFFC on Facebook (https://www.facebook.com/CFFamilyConnection/) where we daily post links to a wide variety of resources. For those who choose to avoid Facebook, we add a list of those links on this site twice a month. Awareness is the big driver behind CFFC's annual Education Day. This year's event is scheduled for Saturday, June 8th. You can find the details at https://www.cffamilyconnection.org/event/cffc-family-education-day-2019/. This page includes a link to the on-line registration form. The Cystic Fibrosis Foundation has increased its efforts to provide relevant information to the CF community; most notably, an expanding list of virtual events. Read about these on-line conferences in CF Foundation Virtual Events 2019. These events are added to the calendar on this site as information becomes available.

Apr

CFFC Facebook Posts – April 2019 – Part 2

04/16/2019 - Do You Have a Nonsense Mutation? - Gunnar Esiaison introduces you to a community targeted at individuals with “nonsense CF mutations” (which are defined in the article). 04/17/2019 - Hiding My CF to Fit In Hurt My Health – One persons “coming out” story. Sound familiar? 04/18/2019 - BeADonor Month: Lung Transplant Resource – As part of Organ Donation Awareness Month, Cystic Fibrosis Canada has produced a list of CF lung transplantation resources. Some of the information is specific to care in Canada; however, you may find the information relevant. You may also find it interesting to compare the approach in Canada to the US. 04/19/2019 - Early Antibiotic Treatment Better to Eradicate New MRSA Infections in CF Patients, Study Suggests – Another study that indicates that the timing of a treatment is as important as the composition of the treatment. Although not specifically noted in the study, we are reminded that treatment results are not universal in the CF community. 04/20/2019 – Research Study on the Experience of Women with CF with Pregnancy – This links takes you to Cystic Fibrosis Ireland which is recruiting study participants. It's not clear whether individuals from the US are eligible to participate. 9Before investing in an international phone call, there is an email address for inquiries.) At any rate, it's good to see that someone is looking at this expanding frontier for the CF community. 04/21/2019 - 10 Ways To Redefine Success as a Parent of a Kid With CF – With all the challenges that come with CF, it is important to recognize the “wins” that make the effort worthwhile.

Apr

Watch the 39th Annual Kit Taylor Memorial Lecture

Dr. Andrea Kelly provided interesting insight on the evolving world of adults with CF in her presentation, "The Intersection of Cystic Fibrosis & Endocrinology,” at the 39th Annual Kit Taylor Memorial Lecture. Through the use of case studies, she increased our understanding of the impacts CF has on the endocrine system. Dr. Kelly also emphasized the importance of educating the medical community at large to the unique challenges CF presents in the body beyond the lungs. For those who were unable to attend (or attendees who want to refresh their memory), the staff at the CF pediatric clinic have arranged access to a recording of the lecture. You can find the lecture at: https://www.youtube.com/watch?v=F73Q7flnfjg&feature=youtu.be&t=2 Be advised that there is a bit of an echo in the audio track due to the use of the room's speaker system. The tech staff did a good job addressing the issue to make the commentary understandable. The Kit Taylor Lecture page published under the Golisano Pediatric Pulmonology department also contains links to the four most recent lectures (2016-2019). You can find those links at: https://www.urmc.rochester.edu/childrens-hospital/pulmonology/kit-taylor-lecture.aspx

Apr

Clinical Trial Alerts – April 2019

Cystic Fibrosis Foundation distributed the following clinical trial update in March. Click the trial title to get more details. April 1, 2019 Phase 3 study of lumacaftor/ivacaftor (Orkambi®) in babies with two copies of the F508del CFTR mutation (Part B) Status: Enrolling Description: This study is taking place at multiple care centers across the U.S. It will evaluate the safety of the drug lumacaftor/ivacaftor (Orkambi®) and its effect on the body. It is for babies ages 1 to less than 2 years old who have cystic fibrosis and two copies of the F508del CFTR mutation. Age: 1 Years to 2 Years Mutation: Two Copies F508del Fev1% Predicted: No FEV1 Limit Number of Visits: 11 Length of Participation: 38 weeks ClinicalTrials.gov link: https://clinicaltrials.gov/ct2/show/NCT03601637

Apr

CFFC Facebook Posts – April 2019 – Part 1

04/01/2019 - -What I Wish People Knew About Lung Transplants – Some thoughts from a person waiting for a transplant. 04/02/2019 – Thank you Dansville Pre-K – This is the kind of story we love to share. CFFC is honored to be the beneficiary of this project. 04/03/2019 - I Work Next to CF Experts, and I Know They Really Care – A reassuring message from someone who works with the folks advancing our knowledge of CF. 04/04/2019 - Jack Goodwin: The Handbook For How To Date Someone With CF – This writer's “wish I had known” story points out the feeling of isolation that may be experienced by those coping with CF. 04/05/2019 - Organ Donation and Cystic Fibrosis – April is the second most important month for educating the community at large about CF. (May is CF Awareness Month, April is Organ Donation Awareness Month). Here are some thoughts on this topic from the Canadian CF community. 04/06/2019 - Virus that Infects Bacteria Turns Immune Response Away from P. aeruginosa, Study Shows – This article not only contains interesting information about the relationship between bacteria, viruses and your immune system, but it also raises the possibility of a vaccine to inhibit Pseudomonas. 04/07/2019 - CF Foundation Joins Amicus Brief in Support of Critical Patient Protections and Coverage Expansion – This is a big deal and it's good to see that there are many organizations working on this issue. 04/08/2019 -

Apr

Thank You Dansville Pre-K

Wednesday, March 20th, was one of those days that fills us with gratitude for the support we get from the extended CF community. That was the day for the formal presentation of the project conducted for the benefit of CFFC by the Pre-K classes at Dansville Central School. The project was selected by the class as part of the school's 100 Days celebration (recognizing the first 100 days of school). . With the help of their teachers, the kids assembled 100 Clinic Baggies for distribution at the pediatric CF clinic at Golisano Children's Hospital. The standard clinic baggie consists of a parking pass for the Strong Hospital garage, a granola bar and a sunny message from CFFC. The Dansville kids enhanced the baggies by creating cards to lighten up the anxiety that can be associated with clinic visits.                     The idea came from teacher Jessica Barber whose son has CF. She has acknowledged the lift they feel when getting the clinic baggie; she appreciates the parking pass while her son enjoys the snack. The assembly process is not difficult; however, this assist from the Pre-K classes provides an appreciated “vacation” from the chore. The icing on the cake was the fund raising associated with the project. The kids contributed spare change and encouraged contributions from others for a total of $185.44. When you receive a Clinic Baggie at your next appointment, say a quiet “thank you” to Jessica, her teaching partners (Brittney Rowe, Chris Spoor and Megan Baumgardner) and all the kids in the Dansville Pre-K classes.

Mar

CFFC Facebook Posts – March 2019 – Part 2

For those who do not visit Facebook, here are the posts to the CFFC page for the second half of March. 03/16/2019 -Living with an unpredictable disease – Many can probably relate to these stories of CF's unpredictability. 03/17/2019 - The 3 Words I Want Every Single Hospital Employee to Hear – This mother is channeling thoughts we have all had. “Please just listen.” 03/18/2019 - Determining what binds to mucus – This may not be a glamorous scientific pursuit but it could be critically important to CF treatments. 03/19/2019 - Connections Winter 2019 – Cystic Fibrosis Canada publishes a quarterly newsetter. While some of the articles are Canada-specific, you may find some to be relevant and interesting. 03/20/2019 - Virus Can Help Treat Pseudomonas aeruginosa in CF, Study Suggests – The use of bacteriophages has been previously reported. This study extended analysis to live a live animal model. 03/21/2019 - Let’s Talk About It: Complementary and Alternative Medicines and Supplements – A very thoughtful approach to considering treatment options outside the “normal” routine of medications. 03/22/2019 - Agenda Set for Education Day 2019 – Here's the news you have been waiting for: the full program for Education Day. This article also includes a link to on-line registration. 03/23/2019 - Amphotericin Holds Promise as Treatment for All CF Patients, Preliminary Study Shows – This approach to replacing the CFTR function in lung lining cells could work for all mutations. 03/24/2019 -