Author Archive

Feb

Clinical Trial Alerts – February 2017

CFF provided a series of clinical trial updates in February 2017. Click the trial title to get more details. The following alert was distributed on 02/21/2017: Arikace for Nontuberculous Mycobacteria (NTM) Description: This study looked at the safety and effectiveness of liposomal amikacin for inhalation (Arikace™), in treating nontuberculous mycobacterial lung disease (NTM). Age: 12 Years to 75 Years Mutation: No Mutation Requirement Fev1% Predicted: No FEV1 Limit Number of Visits: 0 Length of Participation: 12 weeks ClinicalTrial.gov link: https://clinicaltrials.gov/ct2/show/NCT01315236 The following alerts were distributed on 02/02/2017: Phase 2 study of inhaled nitric oxide in people with CF Description: This study is taking place at multiple care centers across the U.S. It will look at the effectiveness of the inhaled drug nitric oxide in adults with cystic fibrosis who are taking an inhaled antibiotic. Age: 18 Years and Older Mutation: No Mutation Requirement Fev1% Predicted: 35 to 85% Number of Visits: 10 Length of Participation: 43 days ClinicalTrial.gov link: https://clinicaltrials.gov/ct2/show/NCT02498535 Phase 2 study of oral glutathione in children with cystic fibrosis Description: This study is taking place at multiple care centers across the U.S. It will look at the safety and effectiveness of the oral drug glutathione in children with cystic fibrosis. Age: 24 Months to 10 Years Mutation: No Mutation Requirement Fev1% Predicted: No FEV1 Limit Number of Visits: 4 Length of Participation: 6 months ClinicalTrial.gov link: https://clinicaltrials.gov/ct2/show/NCT03020719

Feb

CFFC Facebook Posts – February 2017 – Part 1

For our web visitors who do not follow CFFC on Facebook, here are the posts added in the first half of February 2017. 02/01/2017 - Ask Gretchen: How Can I Control My Blood Sugar? - This CFF blog post contains resources to better manage the challenge of CF related diabetes. 02/02/2017 - New Mouse Model May Lead to CF and COPD Therapies, Study Says – You may not like to deal with small rodents, but some are contributing to the search for better CF treatments. 02/03/2017 - CFF Advocacy Action Center – As a follow up to Tuesday's post, here's a link to the CF Foundation's page that lists options for connecting with government officials to promote policies beneficial to the CF community. 02/04/2017 - Carbohydrate That Promotes Biofilm May Be Key to Treating Pseudomonas Infections – Another avenue of research to find more effective treatments for Pseudomonas. 02/05/2017 – Clinical Trial Alerts – February 2017 - This post on the CFFC web site lists the clinical trial alerts distributed on 2/2/17. Any additional alerts issued in February will be added to this page and an announcement will be posted on FB 02/06/2017 - Dealing with Disease Progression – Gunnar and Julia don't shy away from tough topics. Hear what they have to say in this podcast dealing with the inevitable progression of CF. 02/07/2017 - 6 Tips for Staying Organized With CF – Keeping organized gain reduce the stress in daily treatments. 02/08/2017 - First-of-its-kind Study Explores if Stem Cells Might Lessen Inflammation in CF Patients – Another approach to introducing non-CF genetic material to fight lung disease. 02/09/2017 - Did Science Find an Answer to the Lack of Organ Donors? - Gunnar weighs in on the possibility of growing healthy human organs inside other animals. 02/10/2017 - Doctors’ Focus Seen to Delay Lung Transplant Evaluations in CF Patients – Sticking with the transplant theme, here's an interesting study on the decision to make a referral. Perhaps the most curious (disappointing?) fact is that only one-third of the CF center directors responded to the survey. 02/11/2017 - Deciding to Have a Second Child When Your First Child Has CF – One downside to improved Cf diagnostics is increased impact on the decision to have another child. Her is one CF mom's take on the subject. 02/13/2017 - CF ...

Feb

Save the Date – CFFC Education Night

Mark your calendar - May 23, 2017 - for an evening of learning, sharing and socializing. We've made arrangements to hold our event at Brass Bar & Lounge, 363 East Ave, Rochester, NY. Check the calendar entry for a map of the location. Yes, CFFC Education Night. Considering feedback received in prior years, we are experimenting with a new format for the CFFC's annual education event. We are going with a shorter format on a weekday evening. Here's the general outline of the evening: Check in - We will be serving appetizers and beverages. You can use this time to reconnect with your friends, make new acquaintances and visit with our sponsors. Update - We have invited staff from the Rochester CF Center (both pediatric and adult) to share news of what's happening at our clinics and hospitals. Discussion - We will offer three discussion groups, running simultaneously, covering topics selected by our community. Learn more about the survey below. 'Til we meet again - We will close out the event with a brief reflection on the evening. As always, we are concerned about the well being of our guests. We will follow CFFC's infection prevention protocols. Attendees who have CF will be asked to wear purple ribbons so that individuals can make informed decisions about contact with other attendees. Volunteers serving the appetizers will be instructed on infection prevention standards. We will be providing face masks and hand sanitizer. Weather permitting, outdoor space will be available for conversations. We are looking for help from our CF community in finalizing the plans for CFFC Education Night. Please complete the survey which you will find at: https://www.surveymonkey.com/r/5TTC85Y There are just 10 questions to learn a few basics about you, assess the likelihood that you will attend and, most importantly, identify the discussion topics that are of the greatest importance to you. If more than one member of your family is considering this event, please complete a separate survey for each person. NOTE: We've had mixed results testing the survey on phones, so we recommend that you use a computer. May is CF Awareness Month. Please join us on May 23rd so we can all enhance our awareness of various aspects of life with CF as we gather with others facing the same challenges. Stay tuned for more details as our plans progress.

Feb

CFFC Facebook Posts – January 2017 – Part 2

For our web visitors who do not follow CFFC on Facebook, here are the posts added in the second half of January 2017. 01/16/2017 - Clinical Trial Alerts - January 2017 – Two more clinical trial alerts have been added to our listing for January. 01/17/2017 - Inhaled Glutathione Not Advisable Therapy for All CF Patients, Study Says – While the treatment results may be less than hoped, this study may provide a tool for assessing the level of inflammation in the lungs. 01/18/2017 - Cystic Fibrosis in the Workplace – This podcast from Gunnar and Julia explore a topic that adults (and some young adults) living with CF will face in the pursuit of a “normal” life. Their discussion shows that there is no right answer for every situation. 01/19/2017 - Congress Approves Budget Resolution: First Action Step Toward Health Care Reform – CFF's take on the current Congressional activity regarding the Affordable Care Act. 01/20/2017 - Dutch Validation Trial to Test Use of ‘Organoids’ in Studying CF Therapies – Another study looking for a methodology to tailor treatments to the individual. 01/21/2017 - 7 Tips for Taking a Vacation Without Your Kid With CF – Caregivers for individuals with chronic disease need an occasional break from the responsibilities to avoid burn out. Here's a guide to preparing for an extended escape from the routine. 01/22/2017 – Clinical Trial Alerts – January 2017 – CFF sent two more clinical trial alerts this week. Most recent alerts are listed first on the web page. 01/22/2017 - Patients, Parents Fearful of Initial Bacterial Lung Infection, Survey Finds – Psychology is an important component of treatment in chronic disease. This study suggests that care must be exercised in sharing news about Pseudomonas colonization. 01/23/2017 - Meet Our Seven Impact Grant Awardees – CFF acknowledges a wide variety efforts to improve the lives of those living with CF. 01/24/2017 - Enzyme That Degrades Biofilm May Be Key to Treating Pseudomonas Lung Infection in CF – More research into treatments that can break down the Pseudomonas defenses. 01/25/2017 - CF Roundtable Winter 2017 Issue – Another issue jam packed with relevant and timely information. 01/26/2017 - 2017 Kit Taylor Lecture Announced – We're looking forward to another relevant and timely presentation at this year's lecture 01/27/2017 - Perseverance, Resiliency and ...

Jan

2017 Kit Taylor Lecture Announced

The Kit Taylor Memorial Fund has announced that the 37th Annual Kit Taylor Memorial Lecture will be held on Tuesday, March 28, 2017 beginning at 7:30 PM. The lecture will be held in the Kaplan Conference Room at Golisano Children's Hospital.  This is the same location as last year's lecture. Click here for Directions to Kaplan Conference Room. This year's speaker will be Drucy Borowitz, MD, Professor of Clinical Pediatrics and Vice President of Community Partnerships for the Cystic Fibrosis Foundation. Her presentation is titled: Find Your Voice Early and Use It. Drucy is very familiar with both CF and Western NY. She served as the CF center director at the Women and Children’s Hospital of Buffalo for more than 25 years before joining the CF Foundation to lead the Community Partnerships program. Representatives from CFFC had the pleasure of meeting Drucy through a video call shortly after her move to the CF Foundation. We think you will find her engaging and committed to supporting the CF community. As this event is hosted by the Rochester CF center, the CF Foundation protocols for infection control will apply. However, to promote broad access, the lecture will again be streamed live with the broadcast beginning at 7:30 PM. A link to the video stream will be provided on the day of the lecture. Please contact the CF center if you have any questions about attendance.

Jan

CF Roundtable Winter 2017 Issue

United States Adult Cystic Fibrosis Association, Inc (USACFA) just released the Winter 2017 edition of their quarterly newsletter, CF Roundtable. The focus topic for this issue is using non-traditional medicine or treatments. Along this theme you will find articles on the benefits of cranberries, Reiki treatments, natural medicine, kindness as therapy and other alternate therapies. Other useful and interesting information can be found throughout the issue. For example, here are the topics covered in recurring columns: LEAD ARTICLE: Kalydeco: Why It Matters To My Overall Health Post-Lung Transplant ASK THE ATTORNEY: Medical Records and Increase in Continuing Disability Reviews PARENTING: The Power of Playing WELLNESS: What Do You Call Meditating While Vesting? To get into the details of these articles and more, read or download CFR-Winter-2017 You can subscribe to CF Roundtable at: http://www.cfroundtable.com/newsletter/

Jan

CFFC Facebook Posts – January 2017 – Part 1

For our web visitors who do not follow CFFC on Facebook, here are the posts added in the first half of January 2017. 01/01/2017 – Brianna was live – Here is Brianna's performance at today's Jets/Bills game recorded by her mom, Colleen. 01/03/2017 - My Wish List for the New Year – How does Gunnar's new year's wish list compare to yours? 01/04/2017 - High Levels of Vitamin D Supplements May Help Improve Lung Function in CF Patients, Study Shows – Nobody wants to take more pills, but it might be worth it if a simple OTC vitamin can improve lung function. 01/05/2016 - 2017: Our New Year’s Re-Resolutions – Here are some more goals for the new year from the CF community. 01/06/2017 - Blood, Lung-function Tests Can Lead to Early Detection of Serious Bacteria in CF Children, Study Shows – Getting a good bacterial culture from a child can be challenging. This study promises an easier – and less invasive – alternative. 01/07/2017 - Clinical Trial Alert – 01/06/2017 – A research update from CFF. 01/08/2017 - Psychological Impact of Hospital Stays – This conversation between Gunnar and Julia will sound very familiar to those living with CF. It may be a good tool to acquaint family and friends with the dramatic effect CF has on your view of the world. 01/09/2017 - Foundation Joins Chronic Disease Organizations to Educate Policymakers on Needs of People with CF – Now that the Congressional debate over health insurance has begun, it's reassuring to know that CFF and other organizations are speaking out on behalf of the needs of their constituencies. 01/10/2017 - Compound in Soil Bacteria May Combat CF Pseudomonas Infections – Another avenue of research in the fight against Pseudomonas was literally found growing in a backyard. 01/11/2017 - Clinical Trial Alerts - January 2017 – Part 2 - Two alerts distributed by CFF during the first half of January. 01/12/2017 - How I Advocate for Myself In and Out of the Hospital – Advocacy is often misunderstood as a confrontation. As this article explains, Simply understanding your conditions and asking questions at the appropriate times are important aspects of effective advocacy. 01/13/2017 - France’s New Organ Donation Policy is Awesome – Here's an interesting discussion topic. CFFC does not have a position on this issue, but we encourage ...

Jan

Clinical Trial Alerts – January 2017

CFF provided a series of clinical trial updates in January 2017. Click the trial title to get more details. The following alerts were distributed on 01/19/2017: Vertex Lumacaftor (VX-809) and Ivacaftor in Children with CF aged 6 to 11 years and have two copies of the delF508 CFTR mutation Description: This was an open-label study designed to look at the safety of lumacaftor in combination with ivacaftor (Orkambi®). This study was for younger children with CF who have two copies of the F508del CFTR mutation. Age: 6 Years to 11 Years Mutation: Two Copies F508del Fev1% Predicted: No FEV1 Limit Number of Visits: 11 Length of Participation: 27 weeks ClinicalTrials.gov link: https://clinicaltrials.gov/show/NCT01897233 Phase 3 study of Vertex 661 and ivacaftor in people with cystic fibrosis Description: This study looked at the safety and effectiveness of the drug VX-661 in combination with ivacaftor (Kalydeco®) compared to placebo. This study was for people with CF who have one copy of the F508del CFTR mutation and a second CFTR mutation that is not likely to respond to this drug therapy. Age: 12 Years and Older Mutation: One Copy F508del Fev1% Predicted: 40 to 90% Number of Visits: 7 Length of Participation: 20 weeks ClinicalTrials.gov link: https://clinicaltrials.gov/ct2/show/NCT02516410 The following alerts were distributed on 01/13/2017: Phase 2 study of inhaled Alpha-1 HC in people with CF Description: This study assessed the safety and tolerability of two different doses of once daily inhaled Alpha-1 anti-trypsin in people with CF. Age: 18 Years and Older Mutation: No Mutation Requirement Fev1% Predicted: 40 to 90% Number of Visits: 5 Length of Participation: 9 weeks ClinicalTrials.gov link: https://clinicaltrials.gov/show/NCT01684410 BONUS: Baby Observational and Nutrition Study Description: This observational study was conducted to gain a better understanding of the factors that ...

Jan

CFFC Facebook Posts – December 2016 Part 2

For our web visitors who do not follow CFFC on Facebook, here are the posts added in the second half of December 2016. 12/16/2016 - 3-D Map of CF Protein Structure May Help Determine How Disease Develops – Finding the CF gene and examining the mutations was only the beginning of understanding the disease. Scientists hope the new knowledge about the protein structure will lead to more effective treatments. 12/17/2016 - Clinical Trial Alert – 12/15/2016 – Latest update from CFF. 12/18/2016 - How CF Has Impacted My Family Planning Decisions – When it comes to having a family, where there's the will, there's a way. 12/19/2016 – Gene Editing White Paper – A white paper explaining gene editing, in layman's language, has been added to CFFC's information resources. 12/20/2016 - High Airway Glucose Levels and P. aeruginosa Infection Linked to Worsening in CF – More on the science behind the “success” of Pseudomonas aeruginosa in CF. 12/22/2016 - Study Examines Impact of CF Diagnosis on Newborns’ Parents - While the results of this study may seem obvious, we sometimes need an objective resource to recognize truths we feel subconsciously. Next step should be to develop strategies to mitigate these findings. 12/23/2016 - Asking for the Gift of Time – Wouldn't be nice if we could make gifts of time in this holiday season? In a way we can through continued support for the programs that are producing more effective treatments. 12/24/2016 - Video Explains How Gene Editing Could Be Used for CF – Gene editing part 2. This CFF video explains the gene editing process. 12/25/2016 – December is populated with significant holidays for many religions of the world. A common theme across these holidays is birth or new beginnings. May this season bring you a renewed sense of hope for a bright future. 12/26/2016 - Scientists use 'molecular-Lego' to take CRISPR gene-editing tool to the next level – Gene editing part 3. Research that may improve the outcomes of gene editing. 12/27/2016 - Finding a Balance Between CF and High School – As with so many other things, CF complicates an already difficult time of life. 12/28/2016 - Bacterial 'sabotage' handicaps ability to resolve devastating lung inflammation in cystic fibrosis – This study explains why Pseudomonas thrives where other bacteria succumb to the bodies defenses. 12/29/2016 - Pregnancy in ...

Dec

Local Star Brightens New Year

If you have attended CF events in the Rochester area, you have probably heard the beautiful and inspiring voice of Brianna Collichio. She opened CFFC's first 3-on-3 Basketball Tournament. More recently, she has performed at the CF Christmas Ball in 2015 and 2016. But Brianna has performed to larger audiences; notably singing the national anthem at NY Jets football games. To kick off the new year, she will again sing the national anthem in East Rutherford to open the game between the Jets and the Bills on January 1, 2017. Brianna's story was featured on the front page of the 12/31/2016 Democrat & Chronicle. You can read that article here. The news item brings awareness to the daily challenges of life with CF as well as Brianna's unique talents. Thanks for brightening our new year, Brianna!