Author Archive

Jun

Clinical Trial Alerts – June 2019

Cystic Fibrosis Foundation distributed the following clinical trial updates in June. Click the trial title to get more details. June 10, 2019 Study of ABBV-3067 and ABBV-2222 in adults with cystic fibrosis who have two copies of the F508del mutation Status: Enrolling Description: This study will look at the safety and effectiveness of ABBV-3067, a CFTR modulator intended to help CFTR protein function closer to normal. ABBV-3067 will be tested alone and in combination with another CFTR modulator, ABBV-2222. Age: 18 Years and Older Mutation: Two Copies F508del Fev1% Predicted: 40 to 90% Number of Visits: 5 Length of Participation: 3 months ClinicalTrials.gov link: https://clinicaltrials.gov/ct2/show/NCT03969888 June 11, 2019 RESULT: Study of liprotamase non-porcine enzymes Status: Completed Description: This study evaluated the effectiveness of liprotamase, a non-pig-derived pancreatic enzyme replacement therapy (PERT), as compared to Pancreaze®, a pig-derived PERT. Age: 7 Years and Older Mutation: No Mutation Requirement Fev1% Predicted: No FEV1 Limit Number of Visits: 17 Length of Participation: 30 weeks ClinicalTrial.gov link: https://www.clinicaltrials.gov/ct2/show/results/NCT03051490 Vitamin D for enhancing the immune system in people with CF Status: Completed Description: This study evaluated the effect of a single high-dose of vitamin D3 given at the start of a pulmonary exacerbation followed by vitamin D3 maintenance treatment in adults with CF. Age: 16 Years and Older Mutation: No Mutation Requirement Fev1% Predicted: 20% or greater Number of Visits: 6 Length of Participation: 1 years ClinicalTrial.gov link: https://clinicaltrials.gov/ct2/show/NCT01426256 June 28, 2019 Phase 2 study of PTI-808 triple-combination therapy in adults with cystic fibrosis who have at least one copy of the F508del mutation Status: Enrolling Description: This study will look at the safety and tolerability of ...

Jun

CFFC Facebook Posts – June 2019 – Part 1

06/01/2019 - Doing Better By Doing Less – This young man provides his approach to overcoming the depression associated with CF. 06/02/2019 - Nitric Oxide Shows Positive Signs in Clearing Hard-to-treat Mycobacterium Lung Infections in CF – This study provides further evidence of the potential benefits of nitric oxide. 06/03/2019 - Parents, It’s Okay to Let Your Kid Grow Up – When you here “transition” in CF lingo, your mind jumps to the move from a pediatric clinic to an adult clinic. But, as Gunnar Esiason points out, a big transition faces the parents who have a child with CF. 06/04/2019 - Phage treatment for non-tuberculous mycobacterium infection after lung transplant – We've previously shared articles dealing with the science of phage treatments. This article presents the personal side of the story. 06/05/2019 - A Letter to My Body – A woman takes a crack at expressing appreciation for a body that produces constant challenges. 06/06/2019 – Join Ed Day Virtually – If you are unable to join us at Education Day (this Saturday, 6/8) in person, you can catch keynote speaker Jerry Cahill on-line. We plan to stream his presentation through Facebook. To catch the show, go to the 2019 CFFC Education Day event page. The keynote is scheduled to begin at 10:45. 06/07/2019 - Manuka Honey Could Be Used to Treat CF Lung Infection P. Aeruginosa, Study Suggests – Good news for those looking for natural medicines. 06/08/2019 - Address the Unseen Scars: Mental Health and Cystic Fibrosis – Gunnar Esiason tells how he dealt with a significant loss in his life. 06/09/2019 - Adapting Your Diet to Summer – Since it looks like summer has actually arrived, it's time to think about changes to your diet to deal with the warmer ...

May

CFFC Facebook Posts – May 2019 – Part 2

05/16/2019 - So, do you need a little extra incentive to join us at CFFC Education Day? Well, check out the picture. This is the stuff our keynote speaker, Jerry Cahill, has provided as door prizes for our attendees. It's not too early to register. Go to: https://www.surveymonkey.com/r/LL2MP3Q 05/18/2019 - Paul Widmeyer: A Life Changing Relationship – A look at the complexity of love in a relationship that includes CF. 05/19/2019 - Poor Oxygen Conditions May Promote P. aeruginosa Infection Over Other Pathogen in CF, Study Suggests – It seems that, while we're fighting Pseudomonas, it is fighting its competitors. 05/20/2019 – In case you missed the CFFC table at Great Strides on Sunday, you need to see president Karly Schuhart's winning smile. Oh, and by the way, don't forget to register for CFFC Education Day, June 8th. Go to: https://www.surveymonkey.com/r/LL2MP3Q 05/21/2019 - Watching My Parents Grow Older – Here is an aspect of CF longevity that you may not have thought about before. 05/22/2019 - Potential cystic fibrosis treatment uses 'molecular prosthetic' for missing lung protein – Some times, “new” discoveries come from looking at an existing treatment in a different way. The discovery covered in this article may help individuals living with CF regardless of their specific mutations. 05/23/2019 - Andrew W. Eve Memorial Scholarship – With one school year coming to an end, it's time to think about paying for the next school year. Scholarships are available for a range of college studies through the Andrew W. Eve Memorial Scholarship. The application form is available in the linked article. 05/24/2019 - My Message to the St. Louis University School of Medicine Class of 2019: Listen to Your Patients! - It's quite possible that you would deliver a message similar to Gunnar Esiaison's ...

May

CF Roundtable – Spring 2019

The Spring 2019 edition of the CF Roundtable quarterly newsletter was just released by United States Adult Cystic Fibrosis Association, Inc (USACFA). The primary focus of this issue is planning for education and Careers. You can download a PDF version of the current issues here:  http://www.cfroundtable.com/newsletter/download-your-newsletter/ If you prefer an online version, go here:  http://www.cfroundtable.com/online-newsletters/ The contents of the current issue are described in the Editor's Comments presented below. We hope you enjoyed all of the information that was in the Winter 2019 issue of CF Roundtable. We were delighted to have so many writers participate. (By the way, we apologize for our error on the printed cover of that issue. Even though three of us checked the copy, we all missed that we had Autumn 2018 instead of Winter 2019 on the front page. It was, however, correct everywhere else in the print copy and all through the online copy.) Beth Sufian does something a little different in “Ask The Attorney” for this issue. She reviews a movie, rather than writing about legal issues. Be sure to read her comments on Five Feet Apart. As usual, Laura Tillman gives us the links to all the latest “Information From The Internet.” In “Family Matters” Cindy Baldwin talks of her experience with pregnancy while taking Kalydeco. Isabel Stenzel Byrnes writes of the resilience of people in “Spirit Medicine.” In “Speeding Past 50,” I write of the value of volunteering. “In The Spotlight” features an interview with Paul Quinton, who is a superstar in our community. I think you will enjoy his sense of humor. I hope you find much to interest you in this issue. Be sure to check out “Looking Ahead” on page 3 to see if there is a topic that interests you. You don’t have to write on the Focus topic. You may write about anything that is CF-related and hasn’t been published previously. We would love to have you submit some of your writing or original poetry or art works. Until next time, please stay healthy and happy,Kathy

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://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