Author Archive

Oct

Another Year, More Holiday Cheer

We can always use a little cheering up, but the approaching holidays give us motivation to share a little joy across the CF community. Building on the success of last year's program, CFFC will again distribute holiday wreaths and poinsettia to all interested families served by the Rochester CF Center. You initiate the process with an email to info@cffamilyconnection.org with the information noted above and indicating the preference for a wreath or a poinsettia. We will call the recipient to arrange the delivery. Please submit your request by November 3, 2021. We will provide the wreath or poinsettia at no cost. However, if you want to add a personal touch by sponsoring the gift contact, CFFC president Karly Schuhart at KSchuhart03@gmail.com.

Oct

CFFC Facebook Posts – October 2021 – Part 1

10/01/2021 - Why the flu vaccine matters in CF more than ever – We can't let all of the attention on COVID vaccines distract us from the long-standing practice of annual flu shots. 10/02/2021 - How Three CF Diagnoses Changed My World – This story of a unique family also reminds us of the wide variations in diagnosis and symptoms. 10/03/2021 - Pairing bacteriophages with antibiotics to fight drug-resistant pathogens – This research shows that 1 + 1 maybe greater than 2; that is an effective phage combined with an effective antibiotic obtains even greater result than use individually. 10/04/2021 - New Data-sharing Program Aims to Speed Innovation in Rare Diseases – Infrastructure is the often unseen foundation essential to effective operation. This article deals with infrastructure for rare disease (like CF) research. 10/05/2021 – CF Champion Mia Gaudenzi – So young, yet already a CF warrior. 10/06/2021 - Stay well this winter – There's no new advice here; however, we can all do with a reminder of best practices for avoiding the standard winter health hazards. 10/07/2021 - Screening Infants Helps, But Care Needs Improvement – While earlier CF diagnosis has led to better outcomes, more attention is needed for nutrition and hospitalizations. 10/08/2021 - Two Years Without a Pulmonary Exacerbation – Advances in CF treatments have fostered a whole new set of milestones. Congratulations to Gunnar Esiason – and everyone who has matched (or beat) his record. 10/09/2021 - What We Taught Our Daughter Before She Started School – Some tips (or reminders) for helping your child manage at school. 10/10/2021 - “I take my inspiration from my incredible, courageous sister”: Stuart’s story – The ups and downs of life in a family with 3 CF kids. 10/11/2021 - Students Welcome to Apply for ‘Sacks for CF’ Scholarships – Financial help is welcome at any time. Here's an opportunity to help pay for college. 10/13/2021 -

Oct

Clinical Trial Alerts – October 2021

Cystic Fibrosis Foundation issued the following clinical trial alert in October. October 6, 2021 Study of VX-121 in people with CF ages 12 years and older who have one copy of the F508del mutation and one copy of a minimal function mutation Status: Enrolling Description: This study will look at the safety and effectiveness of VX-121/tezacaftor/deutivacaftor, a drug combination intended to help CFTR protein function closer to normal. Age: 12 Years and Older Mutation: One Copy F508del Fev1% Predicted: 40 to 90% Number of Visits: 19 Length of Participation: 64 weeks ClinicalTrials.gov link: https://clinicaltrials.gov/ct2/show/NCT05033080

Sep

CFFC Facebook Posts – September 2021 – Part 2

09/16/2021 - Inhaled drug could treat rare cystic fibrosis mutations – This article, which comes from Israel, describes the early stages of research on an inhaled approach to correcting the CFTR protein. 09/17/2021 - Dr Keith Brownlee: “We won’t stop until everyone can access life-saving drugs” - Like Cystic Fibrosis Foundation, UK's Cystic Fibrosis Trust is committed to finding treatments like CFTR modulators for all mutations and conditions. Interestingly, this article includes a link to a fact sheet on the “emotional and social impact of Kaftrio” [Trikafta]. 09/18/2021 - Bonding Over Breathing – The story of finding new friends wraps around the story of a person living with CF mastering his challenge. 09/20/2021 - Don’t Discourage Your Hurting Friend’s Faith – This blogger explores the evolution of faith when dealing with chronic illness. 09/23/2021 - How Mycobacterium abscessus infections are passed on: Putting the pieces together – Using bacterial DNA, scientist have discovered the means by which Mycobacterium abscessus spread around the world – and outside the CF community. 09/25/2021 - Thoughts on Venture Philanthropy: A Patient-Centered Investment Thesis – Gunnar Esiason shares part of a thesis from his business school days which you can trace to the operation of Cystic Fibrosis Foundation. 09/26/2021 - Ultrasounds May Help Diagnose Pancreatic Insufficiency in Children – Non-invasive diagnostics are are great tools, especially with children. 09/28/2021 - Luke Peters reflects on his transplant journey – This reflection concludes with some recommendations for individuals facing the question of transplantation. 09/29/2021 - Thoughts on Fatherhood: The Single Most Important Goal in my Life – Gunnar Esiason points out that, like everything else, CF puts a special twist on the notion of being a parent. 09/30/2021 - Trusting a Future Where I Do More Than Just Survive – Trikafta affects the emotional, as well as the physical, side of life with CF.

Sep

CFFC Facebook Posts – September 2021 – Part 1

09/01/2021 - Researchers Explore Trikafta in Younger Patients – This article describes four research projects looking at extending the use of Trikafta to children, including infants. 09/02/2021 - New bipartisan legislation can encourage needed antibiotic development – Whether or not you agree with the legislation noted in this article, the discussion provides insight to the economics affecting the development of new treatments. 09/03/2021 - Why We Chose Surrogacy After My Wife With CF Had a Lung Transplant – This blog shows one path to parenthood despite the hurdles raised by CF. 09/04/2021 - Trikafta Helps Lung Function in CF Patients With Certain Mutations – There may be no major revelations in this study, but confirmation is good. One interesting point: there was improvement with Trikafta even where the individual had taken other modulators. 09/05/2021 - Questioning the Psychology of Need – Like many aspects of chronic illness, CF may provide a different analysis of need than the “normal” view. 09/06/2021 - CF Foundation Strongly Urges Universal Masking in Schools – School is open. Vigilance is the key to a healthy year. New York's recently issued guidelines are consistent with the CFF recommendations. 09/07/2021 - Research Overview – Cystic Fibrosis Sinus Disease - Management of complications secondary to CF, such as sinus disease, is important for maintaining an individual's health and quality of life. CF researchers Daniel Beswick, MD, and Anna Zemke, MD, PhD, alongside Eliza Callard, an adult with cystic fibrosis, discuss new research on this important topic including studies looking at the impact of highly effective modulators on sinus disease and sinus surgery outcomes. 09/09/2021 - Minorities With CF Have Worse Lung Function, Study Says - Like many early studies, this one identified an issue that requires more work to understand the “why.” 09/10/2021 - In cystic fibrosis, above-average height in early life tied to highest pulmonary function – Another study that identifies statistics that need further explanation, including whether there is any cause and effect to the correlation. 09/12/2021 -

Sep

Clinical Trial Alerts – September 2021

Cystic Fibrosis Foundation has issued the following clinical trial alerts in September. September 7, 2021 Study to evaluate nebulized BX004-A in adults with cystic fibrosis and chronic Pseudomonas aeruginosa (BiomX Phase 1b/2a) Status: Enrolling Description: This study is testing the safety and tolerability of nebulized BX004-A, a bacteriophage drug intended to treat infections in the lung. Bacteriophages are specialized viruses that kill very specific bacterial strains. Multiple doses of the drug will be tested in adults with cystic fibrosis and chronic Pseudomonas aeruginosa (PsA) to find the best dose. Age: 18 Years and Older Mutation: No Mutation Requirement Fev1% Predicted: 40% or greater Number of Visits: 9 Length of Participation: 192 days ClinicalTrials.gov link: https://clinicaltrials.gov/ct2/show/NCT05010577 Study to evaluate nebulized BX004-A in adults with cystic fibrosis and chronic Pseudomonas aeruginosa (BiomX Phase 1b/2a) Status: Enrolling Description: This study is testing the safety and tolerability of nebulized BX004-A, a bacteriophage drug intended to treat infections in the lung. Bacteriophages are specialized viruses that kill very specific bacterial strains. Multiple doses of the drug will be tested in adults with cystic fibrosis and chronic Pseudomonas aeruginosa (PsA) to find the best dose. Age: 18 Years and Older Mutation: No Mutation Requirement Fev1% Predicted: 40% or greater Number of Visits: 11 Length of Participation: 189 days ClinicalTrials.gov link: https://clinicaltrials.gov/ct2/show/NCT05010577

Sep

Good Day for Golf, Good Day for CFFC

Within an hour, this quiet scene from Saturday, September 11th was abuzz with golfers lending a hand to make CFFC's Living with CF Golf Tournament a success. It was an all-around great day. Great weather. Great fun. Great result for CFFC's programs. Twenty-five players competed in a closely contended 9-hole scramble. The first place team had a comfortable margin but there were ties for the second and third lowest scores. [The ties were resolved by the compared scores on the toughest holes.] Here are the final standings: First place, with a score of 28, went to Tim Meyers, Aaron Huss and Jason Hogan. Dan Sullivan, Jamie Romeo, Jim Fetzner and Kristen Shaw took second place with a score of 33. Dan also took the prize for closest-to-the-pin on the 9th hole. Dave Fitzgerald, Nathan Dederick, Jeremy Cranker and Keith Kaufmann also scored a 33 for the third place slot. A score of 33 earned the fourth place finish for P Gannon Fitzpatrick, Jeff Goldberger, Allan Mason and Steve Scofield. The closest-to-the-pin prize for the 2nd hole was claimed by Steve. Fifth place honors were earned by Mike Sellars, George J Eiff, George R Eiff and Jake French with their 34. The other score of 34 by Jackie Goldberger, Sue Smith, Carl Jutzin and Greg Smith produced a sixth place finish. Of course, there are several components in a successful event. One key element has already mentioned: the players listed above. Having players wouldn't do much good if they didn't have a place to play. We again thank Southern Meadows Golf Club for hosting our event. Club pro, Mike Clawson, acted as official scorer as well as event coordinator. Double duty was also performed by Rick Clawson with his efforts as course superintendent and lunch grill master. The Living With CF Golf Tournament is our major fund raising event so the real winners were the local CF community. We netted over $2,800 to fund our Hospital Help Packet and Clinic Baggie programs. For that, we owe a big thank you to the sponsors shown below. We appreciate the ongoing support of our repeat sponsors and welcome some new friends. It should also be noted that some of our golfers paid above the entry fee without asking for sponsor status.    

Aug

CFFC Facebook Posts – August 2021 – Part 2

08/16/2021 - Depression, Anxiety Common Among CF Patients – Another study where the results come as no surprise. During our Education Day webinar, there was an interesting discussion of the unique aspects of treating depression and anxiety in the CF community. You can revisit that discussion at https://zoom.us/rec/play/TFItrBaP8TSrVGizXUCZBpsD3O4mqpmewlhC9fi39A7IHXuulVWX440iRPlF0GrvkTXNweqYl_ZRlvyc.pjkXUyebT2K70TPS?startTime=1628115940000&_x_zm_rtaid=F36rWqyeQNawMAsVOEu94w.1629115458423.0daaca1d35e2ce79e3e5242e872317c1&_x_zm_rhtaid=370 08/17/2021 - Back to School in Scotland – Although some of the details relate to the specific conditions in Scotland, the general guidance is universal – and timely. The key is establishing a working relationship with your school. 08/18/2021 - NICU Advice From a Mom of a Newborn With CF – This story is geared specifically to the NICU experience, the the writers advice is applicable to the man challenging times in life with CF. 08/19/2021 - This Is Not Alex’s Story, It’s Ours – A good reminder that we need to be careful in applying lessons from one person's life to another. 08/20/2021 - The COVID-19 Vaccine Did Not Harm My Fertility - This is the first of two stories dealing with the road to parenthood for men with CF. This blog by Gunnar Esiason addresses the intersection of IVF and COVID-19 vaccination. 08/21/2021 - Darcy’s Blog: Everything I Did to Improve Our Chances of IVF Success - This is the second of two stories dealing with the road to parenthood for men with CF. This blog by Darcy Esiason provides extensive commentary on a woman's options for promoting the success of IVF. 08/22/2021 - Way of Producing High-yield, High-purity RNA May Aid CF Treatment – We previously shared an article on a new approach to gene editing. This article reports on research that may make gene editing less expensive. 08/23/2021 - Dancing, golfing, and hiking the Ochil hills: one year of Kaftrio – This series of stories give different perspectives on the affect Trikafta (Kaftrio in Europe) has on the quality of life. 08/25/2021 - Have Fun While Supporting Our Community – There are still a couple of weeks to sign up for ...

Aug

Have Fun While Supporting Our Community

Who says you can't enjoy yourself at the same time you are lending aid to others. That's exactly what you do when you play in the CFFC Living with CF Golf Tournament. Come join us on September 11th. You can get the details (and an entry form) in the CFFC Golf Brochure_2021. So what are the good things you help achieve with your entry fee? The money raised through the tournament supports our Hospital Help Packet (HHP) and Clinic Baggie programs. The primary component of these packages are passes for the parking garages at Strong and Highland Hospitals. The clinic baggies also include a granola bar. The parking passes in the HHP for Strong have a value of $63 while the Highland HHP passes are worth $28. The clinic baggie contents cost a little less than $5. You can figure the math on what an entry fee covers, but it is not the monetary value that matters the most. It's the knowledge that somebody understands the stress of hospitalization and clinic visits; that somebody understands the simple convenience of prepaid parking. So, grab your golf clubs and enjoy a round with us knowing that you will bring a little joy to someone facing a difficult day.

Aug

CFFC Facebook Posts – August 2021 – Part 1

08/01/2021 - I’m Finally Falling Asleep Without Battling Anxiety – This is a good version of Joni Mitchell's lyric “you don't know what you've got til it's gone.” 08/02/2021 – Sign up – Did you know you can join in the Education Day webinar on your smartphone? It could be handy if you can't be near your computer at 6:30 on Wednesday (8/4). Be sure to download the (free) Zoom app before hand. [NOTE: Event was held 9/4] 08/03/2021 - Not Letting CF Hold Me Back From Traveling – Trikafta may be the star of this story but planning and precaution have big supporting roles. 08/04/2021 - Doctors Willing to Help Specialists in CF Infant Care, But Concerns Evident – With the differences in US and Canadian health care systems, it is unclear how well the results of this study translate to this side of the border. That said, the conclusion is relevant; that is, more education and coordination between primary care providers and CF specialists is warranted. 08/05/2021 – Another Educational Day – Don't miss this opportunity to see an engaging presentation (including responses to attendee questions) by Gunnar and Darcy Esiaison. This article includes a link to a recording of the program. 08/06/2021 - Working from home isn’t just a perk of lockdown – it’s what keeps me well at the best of times – This story has two threads: people adapting to the protocols of COVID have a glimpse of life with CF, and difficulties of dealing with CF in the workplace. 08/07/2021 - Nutritional Status of CF Children Linked to Teenage-onset Diabetes – Getting kids to eat well is always a challenge but this study may add motivation. 08/08/2021 - CF Sinus Disease Webinar – You can use this link to register for a cystic fibrosis research webinar focusing on sinus disease offered by Cystic Fibrosis Foundation on August 25th. 08/10/2021 - New CRISPR/Cas9 technique corrects cystic fibrosis in cultured human stem cells – A further advance in the technique to correct CFTR mutations. ...