News

Jul

CFFC Annual Financial Report for 2018-19

The results of our operations for the 2018-19 fiscal year, which ended on June 30, 2019, are presented in CFFC Financial Statement 06302019. The charts presented on our Finances page display the composition of the cumulative revenues and expenses since CFFC was established in 1993. In recent years, the primary sources of revenue were the generous sponsors of our CF Education Night/Day event. Our 2018 event was held in July 2018 and the 2019 event was held in June 2019. Therefore, the revenues from program sponsors reflected in the 2018-19 fiscal year represents two events. Our primary fund raising event is the Living with CF Golf Tournament scheduled in September; however, the tournament was not held in 2018. Donations and memorials (including the collections through the Amazon Smile program) reflect the support our organization receives from the local community. Patient benefits consisted primarily of our Hospital Help Packets (parking passes and food stipends) and Sunshine Clinic Baggies (parking passes and nutrition bars). Due to the timing of purchases, there were no parking passes were purchased for the Strong garage in the 2017-18 year while multiple purchases were made in the 2018-19 year. As noted above, the CF Education Night program was offered in July, so no expenses are shown for this event in the 2017-18 year and the expenses shown for 2018-19 represent two events. We appreciate the support from all corners of our community which allows the continuation of our core programs.

Jul

CFFC Facebook Posts – July 2019 – Part 1

07/01/2019 - An Emotional Reunion With My Donor’s Family – Lung transplantation is emotionally complex. That complexity increases if the recipient gets to meet the donor's family. 07/02/2019 - Diet Tips from a ‘Dying’ Girl – This is not a blog about what to eat. It is an honest look the emotions generated by the body CF gives you. It is one piece of the mental health struggle of CF. 07/03/2019 - Food and CF – Caregivers’ Perspective – Unlike yesterday's post, this blog on food includes observations from Canadian CF caregivers for maintaining nutrition. 07/04/2019 - Bonding With My Son During Daily Treatments – On one of the biggest family holidays, this story shows how the challenges of CF can build a stronger family unit. 07/05/2019 - Adding CF-specific Variables More Accurately Prioritizes Patients on Lung Transplant Waitlist, Study Says – This study raises two questions. (1) What is the process for changing the evaluation criteria? (2) Are there factors for non-CF individuals on the wait lists that could also affect their status? Still, it is an interesting finding. 07/06/2019 - Time to Tee Up for the 2019 Living with CF Golf Tournament - Come join us on 9/14 for a fun time that supports CFFC's mission. 07/07/2019 - Staying Positive After My First Hospitalization – Like everything else with CF, hospitalizations are different for everyone, but this story probably sounds familiar. 07/08/2019 - Research blast on the ABC of the CF lung – This article explains the science behind the familiar defects in CF lungs – and research ...

Jul

Time to Tee Up for the 2019 Living with CF Golf Tournament

The current streak of warm weather has confirmed that summer - and comfortable golfing - is finally here. That leads us to ask you to sign up for our Living with CF Golf Tournament. In an interesting twist on the tournament name, "living with CF" resulted in a suspension of the 2018 event. Two key members of the tournament team were focused on their loved ones' recovery from double lung transplants. So, this year's tournament takes on special meaning as we celebrate their new lives post transplant. We are picking up where we left off. The event will again take place on the second weekend in September - Saturday the 14th. We will give you an enjoyable morning (8:00 check-in, 9:00 tee off) while leaving you free for the afternoon (wrap up by 1:00). Southern Meadows Golf club will again host our event and the entry fee remains unchanged ($70 per player, $250 for a foursome). The tournament is player friendly with 9 holes of play using a scramble format. We will form balanced teams for people who do not sign up as foursomes. We also make sure you are well fed with coffee and snacks at check-in, and a buffet lunch hot off the grill at the club. Details of the event, plus an entry form, are included in the CFFC Golf Brochure_2019. If you have any questions or need more information, you can contact the tournament chair at gsmith@cffamilyconnection.org. Come join in the fun!

Jul

CFFC Facebook Posts – June 2019 – Part 2

06/15/2019 - Navigating Disabilities Services and Transitioning to College – In a follow up to Gunnar's prior blog, he offers recommendations on on of the first steps to take after arriving at college. 06/16/2019 - Lung transplant referral for individuals with cystic fibrosis: Cystic Fibrosis Foundation consensus guidelines – The CF Foundation sponsored a committee that produced guidelines to be used by CF centers in approaching referral for lung transplantation. Perhaps the most significant recommendation is that the care team should initiate transplant discussions even where the person with CF is not inclined to pursue that option to ensure that the final choice is fully informed. Many other meaningful recommendations were formulated by the committee. It is worth noting that representatives of the Rochester adult CF clinic and one member of our CF community participated in the process to produce the guidelines. 06/17/2019 - Mental Health Insights – Like CF awareness, attention to mental health cannot be limited to the month of May. This blog gives first-person insight to some of the issues. [ Apologies. CF Roundtable recently overhauled their web site and the link no longer works.] 06/18/2019 - Inhaled Imipenem/cilastatin an Alternative Treatment for Lung Infection in Children with CF, Case Reports Show – Sometimes it's not the drug, but the way it's delivered, that produces negative side effects. 06/20/2019 - Why I Decided Not to Get a Lung Transplant – Every case of CF is unique. That applies to each person's decisions regarding her/his treatment plan. The key to every option, including transplantation, is careful consideration of the associated pros and cons. 06/21/2019 - SmartCareCF – what’s next? - Here's a progress report on the effort to enhance remote health monitoring in the UK.

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.