Author Archive

Aug

One Month to the Tournament

That's right - only one month to go until we tee off in the fourth annual Living with CF Golf Tournament on September 10, 2016 at Southern Meadows Golf Club. It's too late to be the first person or foursome to submit and entry but, if you sign up now, you can avoid being the last entrant. We have kept the fees the same as last year: $70 per golfer or $250 if you sign up as a foursome. The entry fee covers: greens fees, cart rental, welcoming coffee and snacks and a buffet lunch. And there are prizes, too! Check-in starts at 8:00 AM with a shotgun start at 9:00 AM. The tournament is nine holes played in a scramble format which ensures a steady pace of play.  So you can enjoy a round of golf, a leisurely lunch and still have the afternoon free for other activities. All this fun while you are helping CFFC to finance their programs that directly benefit the Rochester/Finger Lakes CF community. Please show your support by joining us on September 10th. Fill out the entry form in the CFFC Golf Brochure_2016. You can get directions on the Living with CF Golf Tournament calendar entry.

Aug

Product Safety Alert

The FDA issued a notice regarding the recall of a wide variety of liquid drug and dietary supplement products by PharmaTech. This notice is particularly critical for people living with CF since the products are widely used by the CF community and the contamination involves Burkholderia cepacia. Here is the text of the FDA press release: Liquid Drug and Dietary Supplement Products by PharmaTech: Recall - Risk of Product Contamination Including drug products: Aller-chlor Antihistamine Diocto Syrup Docusate Sodium Ninjacof Ninjacof A Senexion Liquid Senna Syrup Sennazon Syrup Virtrate-2 Virtrate-K Including dietary supplement products: Calcionate Syrup Cerovite Liquid CertaVite with Antioxidants CytoDetox D3 Vitamin Liquid D-Vita Drops Fer-iron Liquid Ferrous Drops Ferrous Sulfate Liquid Liquid Vitamin C Pedia D-Vite Drops Pedia Poly-Vite Drops Pedia Tri-Vite Drops Poly-Vita Drops Poly-Vita Drops with Iron Polyvitamin liquid Polyvitamin liquid with Iron Renew HC Tri-Vita Drops Tri-Vitamin liquid [Posted 08/09/2016] AUDIENCE: Pediatrics, Pharmacy, Family Practice, Consumer ISSUE: PharmaTech, LLC is voluntarily recalling all liquid products due to a potential risk of product contamination with Burkholderia cepacia. See the press release for a complete listing of affected products. If a product contains B. cepacia, its use could result in infections in patients with compromised immune systems and in patients with chronic lung conditions such as cystic fibrosis. Some of these infections may be serious or even life-threatening in the at risk patient population. BACKGROUND: This recall affects all liquid products from October 20, 2015 through July 15, 2016. RECOMMENDATION: PharmaTech, LLC is notifying its distributors and customers by recall letter and is arranging for return of all recalled products. Consumers, pharmacies, and healthcare facilities that have product which is being recalled should stop using and dispensing them immediately. Healthcare professionals and patients are encouraged to report adverse events or side effects related to the use of these products to the FDA's MedWatch Safety Information and Adverse Event Reporting Program: Complete and submit the report Online: www.fda.gov/MedWatch/report Download form or call 1-800-332-1088 to request a reporting form, then complete and return to the address on the pre-addressed form, or submit by fax to 1-800-FDA-0178

Aug

CFFC Facebook Posts – July 2016

For those of you who don't follow CFFC on Facebook, here are the original posts made to our page during July 2016. 07/03/2016 – Social Security Administration Updates Eligibility Requirements for Disability – Important news for those looking for financial support. 07/05/2016 - Unequal Time: Lessons From Growing Up With Siblings With CF – Another challenge of dealing with a chronic disease – giving equal time to others in the family. 7/06/2016 - iSPERSE Platform for Pulmonary Diseases by Pulmatrix, Inc. - We were pointed to this video by Cystic Fibrosis News Today. It is basically a commercial but it contains information on an exciting new form of inhaled delivery for treatment of chronic lung diseases including CF. 07/07/2016 - What Doctors Know About How Bad It Is, and Won’t Say – Thanks to Chris Kvam for sharing this article. It's a nice follow up to the discussions at CF Education Day addressing patient activation and building strong teams with care providers through improved communication. 07/08/2016 - My Morning Routine - Cystic Fibrosis – This video won't providing any new information to CF veterans, but it may be useful for sharing with family and friends who are unfamiliar with the burden of treatments including the continuation of IV meds after an in-patient stay at the hospital. 07/09/2016 - Cystic Fibrosis Drugs Can Be Tested First Using Patient’s Own Stem Cells in Laboratory – Research in Europe presents the possibility of personalized treatments and avoiding ineffective treatments. 07/10/2016 – Summertime Tips - Most of you in the CF community know these tips, but it never hurts to refresh your memory. 07/11/2016 - What CF Can and Cannot Take Away From Me – Establishing a sense of control is difficult when battling a chronic illness. Here's a look an one person's approach. 07/13/2016 - Researchers Think Ibuprofen, Taken at High Inhaled Doses, Can Treat Cystic Fibrosis – Researchers looking to manage inflammation with fewer side affects. 07/15/2016 - Kicking and Screaming: Dealing With CF and Anger – Life with CF evokes a wide variety of emotions. In this CF Community Blog, Ali reminds us that we don't always have ...

Aug

Clinical Trials – July 2016

On July 29, 2016, the Cystic Fibrosis Foundati0n (CFF) provided alerts on the following clinical trials. The trial title is a link to expanded information on the CFF web site. Additional information may be found through the ClinicalTrials.gov links included with each alert. Phase 3 study of lumacaftor/ivacaftor in children with CF Description: This two-part, open-label study is taking place at multiple care centers across the U.S. It will look at the safety and effectiveness of lumacaftor/ivacaftor, as well as how the body processes the drug, in children with CF. Age: 2 Years to 5 Years Mutation: Two Copies F508del Fev1% Predicted: 40% or greater Number of Visits: 11 Length of Participation: 32 weeks ClinicalTrial.gov link: https://clinicaltrials.gov/ct2/show/NCT02797132 Phase 2 study of GS-5745 in adults with CF Description: This study is taking place at multiple care centers across the U.S. It will look at the effectiveness of the anti-inflammatory drug GS-5745 and will use a placebo control. Age: 18 Years and Older Mutation: No Mutation Requirement Fev1% Predicted: 40 to 80% Number of Visits: 6 Length of Participation: 24 weeks ClinicalTrial.gov link: https://www.clinicaltrials.gov/ct2/show/NCT02759562 Phase 4 study of adherence to lumacaftor/ivacaftor in people with CF Description: This study is taking place at multiple care centers across the U.S. It will look at the impact of using a smart device that monitors medication use on adherence to lumacaftor/ivacaftor. Age: 16 Years and Older Mutation: Two Copies F508del Fev1% Predicted: 40% or greater Number of Visits: 7 Length of Participation: 48 weeks ClinicalTrial.gov link: https://clinicaltrials.gov/ct2/show/NCT02823470 Phase 3 study of ivacaftor in babies who have a CFTR gating mutation Description: This two-part, open-label study is taking place at multiple care centers across the U.S. It will look at the safety and effectiveness of ivacaftor, as well as how the body processes the drug, in babies who ...

Jul

New Research Links

The Cystic Fibrosis Foundation has made improvements in the tools you can use to learn more about CF research. Here's the text of their announcement: We have seen dramatic advances in our search for new treatments, due in large part to people with CF participating in clinical trials. To support our growing body of research and ensure as many people with CF as possible can participate in these trials, we have improved the design and functionality of our Clinical Trial Tools. The Clinical Trial Finder now makes it easier than ever to find trials by location, mutation, age and more -- as well as contact research coordinators about a specific study from within the tool. The Drug Development Pipeline clearly and quickly shows what phase each drug is in, including pre-clinical development programs. We encourage you to take a look at the new tools. These links have been added to our Information Resources Medical Care page under the Research heading.

Jul

Spread the Word

The 2016 edition of the Living with CF Golf Tournament is scheduled for September 10th. We're confident that this is the year we break the weather jinx that, to date, has turned our participants into true heroes. CFFC runs this tournament for a dual purpose. First, the tourney is a fund raising event to help us maintain the programs that benefit the local CF community. Perhaps more importantly, we use the tournament to raise awareness of CF in the region beyond those who deal with the disease directly. Much of the publicity around CF highlights the many challenges that are part of the daily experience. While this view is important for garnering support, we also want to emphasize the rest of the experience - the good parts. We chose the name "Living with CF" for the tournament to draw attention to all the aspects of "normal" life that those diagnosed with CF share with the rest of the population. Please help us spread the word about our golf tournament and, thereby, the richness of life beyond the challenges of CF. Details about the event (including an entry form) can be found in the CFFC Golf Brochure_2016. A map locating the Southern Meadows Golf Club can be found on the CFFC calendar page for the event. Oh, by the way, sign up and join us on September 10th.

Jul

CF Roundtable Summer 2016 Issue

CF Roundtable has just issued the summer 2016 edition of their newsletter. As usual, it is packed with interesting and relevant stories. There are two ways to access the newsletter: You can read/download the PDF version - CFR-Summer-2016 You can read the newsletter on-line at: http://www.cfroundtable.com/online-newsletters/ Here's the summary of the issue contents presented in the Editor's Notes column: Starting on the front page, Jeannine Ricci shares information about obtaining Kalydeco for off-label use. It can be done. The Focus topic of this issue is: Living With Anticipatory Grief And Survivor’s Guilt. Among the people who wrote about the topic is Linda Stratton, who writes about guilt and faith. Nicole Kowal continues the theme as she writes of guilt and support. “Transplant Talk” finds Piper Beatty talking of feelings of guilt surrounding lung transplant. In “Parenting,” Dana Giacci Rogers tells of her experience with a pregnancy that ended differently from what she was expecting and how she handled it. Julie Desch, in “Wellness,” discusses why we shouldn’t feel any guilt about the ill-health or death of others who have CF. I throw in some of my thoughts on the topic, as well, in “Speeding Past 50.” Isabel Stenzel Byrnes writes of the meaning of life in “Spirit Medicine” and Aimee Lecointre talks about yoga in “Active For Life.” Be sure to read Andrea Eisenman’s review of the film, Up For Air, about Jerry Cahill and his life with CF. We find Anna Payne “In The Spotlight.” Laura Tillman has compiled a lot of contacts for us in “Information From The Internet.” In “Searching For A Cure,” Reid D’Amico discusses big data collection and the future of clinical trials, and Meranda Honaker lists some trials that are enrolling now.

Jul

Online Stress Reduction Course

Cystic Fibrosis Research, Inc. (CFRI) is offering an online course entitled Mindfulness Based Stress Reduction. Here's the text of their announcement: Mindfulness Based Stress Reduction Course  8-week online class led by Julie Desch, MD Beginning Sunday, August 7, 2016 Reduce your anxiety, stress, chronic pain, and/or depression! This online MBSR class, taught by Dr. Julie Desch, is created for those with CF aged 16 and older AND CF parents/caregivers. Classes are recorded, so if your summer plans cause you to miss a session, you may participate later and stay up to date. Classes will be held most Sundays, from 4:00 – 6:00 pm PST. Only $75 for the 8-week session. Made possible through grants from Genentech and Vertex Pharmaceuticals. You can register for the course at: https://41224.thankyou4caring.org/mbsr?erid=3987377&trid=35731c18-c13a-436c-9c5c-6ea254945a81

Jul

New Scholarship for People with CF

Here is the text of an announcement from Gunnar Esiason concerning a new scholarship offered through the Boomer Esiason Foundation. I am pleased to announce that today the Boomer Esiason Foundation scholarship program is launching the Gunnar Esiason Own It Scholarship for college students with cystic fibrosis. We are now accepting applications through September 9, 2016. College is a time for people to figure out who they are. It’s important to get involved, be active and achieve goals that maybe were once thought of as being too lofty. This scholarship is looking for well-rounded students who have a tight grasp on not only cystic fibrosis, but also the life that surrounds the disease. I think it’s important for people to feel comfortable with CF and have a want to share it with the world – people with CF have to own it. There’s no running away from it and there certainly is no hiding from it. Cystic fibrosis is a part of our lives whether we like it or not. Success with CF starts with understanding it, caring for it and sharing it. College is more than just a classroom. It’s a chance for you to understand yourself. It’s a chance for you to grow up and prove to yourself that independence is possible. It’s a chance for you to shape your personality and create memories that will last for the rest of your life. It’s a chance for you to lean that there is no better advocate for you than yourself. You can find more information about the Gunnar Esiason Own It Scholarship (deadlines, requirements, restrictions, etc…) by clicking on the scholarship tab at the top of the site or by visiting the Boomer Esiason Foundation Scholarship Program page.

Jul

CFFC Financial Results for 2015-16

CFFC's fiscal year ended on June 30, 2016. The results of our operations for the year are presented in CFFC Financial Statement 06302016. Charts that depict the breakdown of revenues and expenses since CFFC was established in 1993 are presented on our Finances page. Once again, our primary revenue support came from the generous support of the CF Education Day sponsors. These contributors are listed in the Applied Education Day post. The Living with CF Golf Tournament was the primary fund raising event with small amounts collected through the Amazon Smile program. Donations and memorials reflect the support our organization receives from the local community. Direct benefits to the Rochester/Finger Lakes CF community are delivered through the parking passes and food stipends included in our Hospital Help Packets and Sunshine Clinic Baggies. Sharing information with the local community played a larger role in our budget this year with the relocation of our web site as well as the CF Education Day program. Two scholarships were awarded from the Andrew Eve Memorial Scholarship Fund. Our pool of volunteers allowed to us keep our administrative costs low - just over 1% of total expenditures. The steady financial performance for CFFC ensures that we can continue our core programs. Thank you for your on-going support.