Author Archive

Nov

CFFC Facebook Posts – November 2022 – Part 1

11/01/2022 - Orkambi’s Benefits in the Real World Go Beyond Lung Function: Study – It should not come as a surprise that CFTR modulators affect multiple organs but it is good to have research to support our assumptions. 11/02/2022 - Non-white newborns with cystic fibrosis more likely to be missed in screening – We look to newborn screening to get a head start of treatments; however, some populations will not receive that benefit if mutations common among minority populations are not included in the screening. 11/03/2022 - Unstoppable in our search for answers: 5 highlights from our Research Impact Report – UK's Cystic Fibrosis Trust shared some highlights of their analysis of research over the last year. 11/04/2022 - Transplant Recovery Then and Now – You may know Jerry Cahill from his fitness videos and other CF promotions. He shares his story of two transplants and the differences age can produce. 11/05/2022 - Airway Clearance Physiotherapy Can Ease CF Respiratory Symptoms – Structured studies can identify better treatment options, but they also demonstrate that what works for the majority may not be the best option for some. 11/06/2022 - Candice’s Story – Every story is unique, yet there are common threads in all lives coping with CF. 11/07/2022 - Exploring Treatments for People With Nonsense and Rare Mutations – This blogger's summary of the first plenary session at the NACFC has two messages. One, the Cystic Fibrosis Foundation continues to look for treatments that benefit all regardless of mutation. Two, there is good reason for hope. 11/08/2022 - The Benefits of Having Dogs to Accompany Me on My CF Journey – Your support network can extend beyond the human species. 11/11/2022 – The NACFC Recap Is Here – You can now view videos of the three plenary sessions from the 2022 NACFC plus summaries by members of the audience. 11/12/2020 - Redesigning aminoglycoside antibiotics to prevent hearing loss side effects: a research explainer – Treatments can be a balancing act between ...

Nov

The NACFC recap is here

Recordings of the three plenary sessions at the 2022 North American Cystic Fibrosis Conference are now available. Here is the announcement from the Cystic Fibrosis Foundation. That’s a wrap on this year’s North American Cystic Fibrosis Conference! In case you missed it, we’re here to help get you up to speed on the highlights from this year’s conference.  Plenary 1: Hope for All: Addressing the Needs of Those With Untreated CF Mutations  As most people with cystic fibrosis who have two nonsense or other rare mutations cannot benefit from CFTR modulators, there is a critical need to develop treatments that target the underlying cause of their disease. Following plenary 1 of this year’s North American Cystic Fibrosis Conference, Caroline Starnes, an adult living with cystic fibrosis, shares her top takeaways.  Read Caroline’s blog »  Watch Plenary 1 on YouTube »  Plenary 2: It Takes Everyone: Novel CF Therapeutics and Clinical Trial Strategy to Accelerate Our Mission  We’ve made significant progress to advance therapies for people with cystic fibrosis over the past two decades, transforming the lives of many with the disease. However, there is still a critical need for innovative new therapies to treat the underlying cause of CF as well as the many complications of the disease. Following plenary 2 of this year’s North American Cystic Fibrosis Conference, Mel Kotlyar, an adult living with cystic fibrosis, shares his top takeaways.  Read Mel’s blog »  Watch Plenary 2 on YouTube »  Plenary 3: Evolving With the Times: Staying Agile With a Diverse and Aging CF Patient Population  People with cystic fibrosis living longer, healthier lives compel us to adapt how we partner with the CF community to provide quality CF care. Following the final plenary of this year’s North American Cystic Fibrosis Conference, Meagan Tenyer, an adult living with cystic fibrosis, shares her top takeaways.  Read Meagan’s blog »   Watch Plenary 3 on YouTube » Looking for additional recordings? We’re on it. Most NACFC sessions, including plenaries, symposia, many discipline groups, and lunch and learns will be available on YouTube by November 21. 

Oct

CFFC Facebook Posts – October 2022 – Part 2

10/16/2022 - Using iPSCs, researchers create cells that represent the airways of cystic fibrosis patients – This research demonstrated that a patient's lung cells could be produced in a lab allowing testing for individualized treatments. The research was aimed at finding treatments for individuals who do not benefit from CFTR modulators. 10/17/2022 – CFFC's Expanded Holiday Decor Offer – A reminder to get your orders in by October 25th. See the article for details. [Offer now closed] 10/18/2022 - Becoming a Chef Has Helped With My CF – As this blogger notes, people living with CF have a challenging relationship with food. His resolution is unique but may give you some ideas on winning the battle. 10/19/2022 - Gene Editing Corrects CF Mutation in Multiple Organs All at Once – Since CF impacts multiple organs, this research promises a comprehensive approach to a gene editing treatment. The variance in results suggests further study is necessary. 10/20/2022 - “My motto is ‘communication, communication, communication’”: CF nurse Tes retires after 19 years in CF specialist services – Tes, the nurse interviewed in this article, worked as a CF nurse in the UK. Reading her observations will confirm the notion that core values of nursing and CF care are universal. 10/22/2022 - Yet Another Test to Find the CFTR Modulators That Work for Me – This story has two messages: (1) CFTR modulators don't yet work for everyone living with CF, and (2) don't give up hope. 10/23/2022 - Finding an Identity Beyond CF and Motherhood – The expanding expectations for life with CF expand call for a reevaluation of the what the future is like. 10/24/2022 - Diwali and cystic fibrosis: How our community are celebrating this year – A reminder that CF affects multiple cultures – and the common challenge of fitting CF into your family traditions. 10/25/2022 - Pain relief without side effects and addiction – While this research is not directly related to cystic fibrosis, pain management is often an element of CF care. Pain relief without the risk of respiratory ...

Oct

CFFC Facebook Posts – October 2022 – Part 1

10/01/2022 - “We need to see and listen to everybody in the cystic fibrosis community”: Cydney’s story – A reminder from the UK that generalizations about the CF population can have negative consequences for those who do not match common image. 10/04/2022 – Western NY Breath of Life Gala - Cystic Fibrosis Foundation Western New York Chapter is recognizing, among others, Donna Germuga with the Excellence in Care Award. As you know, Donna is a respiratory tech who works at both the pediatric and adult clinics. 10/05/2022 - The Importance of Friends in My Health Journey With CF – The support network of family and friends is a critical element in the CF physical and mental health care plan. 10/06/2022 - Robotic drug capsule can deliver drugs to gut – Another one for the science geeks. This research deals with delivering drugs in the intestines but the notion of drilling through mucus barriers suggests a potential CF application. 10/07/2022 - How I Protect Myself From Daycare Germs as a Parent With CF – Seeking a “normal” life requires a thoughtful approach to staying healthy. 10/08/2022 – CFFC's Expanded Holiday Decor Offer - With summer in our rear view mirror, CFFC is looking forward to the fall/winter holiday season. We are again offering the opportunity to brighten the day for a loved one with a piece of holiday décor. 10/09/2022 - Anti-inflammatory Medications in CF May Help Reduce Lung Bacteria – Drug combos are common in treating lung infections. This research indicates a different kind of combo may be more effective in reducing antibiotic resistance. 10/10/2022 - Cystic fibrosis patients can benefit from vitamin supplements, research shows – Therapies don't have to be complex; vitamin supplements can help reduce inflammation. 10/11/2022 - CF Can’t Stop My Creativity – CF can change the path but doesn't have to end the pursuit of a dream. 10/12/2022 - The Trust's Clinical Trials Accelerator Platform receives funding from the Cystic Fibrosis Foundation for the next five ...

Oct

CFFC’s Expanded Holiday Decor Offer

With summer in our rear view mirror, CFFC is looking forward to the fall/winter holiday season. We are again offering the opportunity to brighten the day for a loved one with a piece of holiday décor. Building on the favorable response from last year, we are expanding the offer in two ways. First we are adding a new option – a Christmas cactus - to the list of items in our offer. You can choose one of the following: 14” Evergreen wreath decorated with holly berries Red Poinsettia in an 8” pot Christmas cactus in a 6” pot These items will be delivered to the home of a person living with CF FREE of charge. Second, we recognize the importance of the CF support network. CFFC is extending the holiday décor offer to family, friends or other significant members of the care team. These items will be delivered to the designated person for a charge of $25. To guarantee delivery, we need your order by October 25th. Place your order in an email to CFFC president Karly Schuhart at kschuhart03@gmail.com. Include the following information: Name of the recipient Recipient's address Recipient's phone number so we can confirm the delivery Recipient's status – living with CF, family, friend, other If buying an item, indicate the method of payment (see below) If the gift is for a member of the support network, there are three ways to remit your payment: By check in the amount of $25.00 made payable to CFFC mailed to CFFC, PO Box 93328, Rochester NY 14692. Through PayPal at :https://www.paypal.com/donate/?hosted_button_id=8B7UPAC79DZAJ Through Venmo using @Karly-schuhart

Oct

Clinical Trial Alerts – October 2022

Cystic Fibrosis Foundation issued the following clinical trial alerts in October: October 3, 2022 Study to evaluate the standardizing of treatment for pulmonary exacerbations in children and adults with CF ages 6 and older. Status: Enrolling Description: This study will look at pulmonary exacerbations, which are a worsening of respiratory symptoms, in people with CF who need to be treated with intravenous (IV) antibiotics. It will compare treatment with one antibiotic (a beta-lactam) to treatment with two antibiotics (tobramycin and a beta-lactam) to learn whether there is a difference in lung function and symptom improvement between the two groups. This study is for people ages 6 and older. Age: 6 Years and Older Mutation: No Mutation Requirement Fev1% Predicted: No FEV1 Limit Number of Visits: 3 Length of Participation: 48 days ClinicalTrials.gov link: https://clinicaltrials.gov/ct2/show/NCT05548283 October 27, 2022 Study of galicaftor/navocaftor/ABBV-576 combination therapy in adults with cystic fibrosis who have at least one F508del mutation and are on stable elexacaftor/tezacaftor/ivacaftor (Trikafta) treatment. Status: Enrolling Description: This study will look at the safety and effectiveness of the galicaftor/navocaftor/ABBV-576 combination therapy, a combination of CFTR modulators intended to help CFTR protein function closer to normal. This study is for adults with cystic fibrosis who have at least one F508del mutation. Age: 18 Years and Older Mutation: Two Copies F508del or One Copy F508del Fev1% Predicted: 40 to 90% Number of Visits: 6 Length of Participation: 3 months ClinicalTrials.gov link: https://clinicaltrials.gov/ct2/show/NCT04853368

Oct

CFFC Facebook Posts – September 2022 – Part 2

09/16/2022 - Learning to Live With CF After a Late Diagnosis – Finding your path to life with CF provides lessons that can be applied to aspects of your life. 09/17/2022 - Living With CF Does Not Make Me a Hero – We tend to put the “hero” or “warrior” label on people managing their lives with CF. Maybe that's not fair; maybe we should just let them be regular folks. 09/18/2022 - Making Lifelong Friendships With Other Moms of Kids With CF – No one understands a person with CF like another person with CF. The same goes for moms and other family members. 09/19/2022 - Community Stories - Victoria Lachowska - Hypertonic saline is part of some treatment plans; however, it usually doesn't come with seaside vacations. 09/20/2022 - Supplemental Oxygen May Alter Lung Microbiome in CF Patients – There's a saying that goes “the solution to the problem only changes the problem.” This research indicates that the use of supplemental oxygen to address low levels may contribute to other negative aspects of lung disease. 09/21/2022 - Two Years Ago This Week, I Decided My Life Needed to Change – Improvements in treatments have produced steady progress for longer life with CF, but the introduction of CFTR modulators was a dramatic change that allowed a new focus on the future. 09/22/2022 - Not Being Prepared to Outlive Your Loved Ones – Here's a different take on survivor's guilt. 09/23/2022 - CF Care and Research Education & Connection Survey – From the Cystic Fibrosis Foundation: “The CF Foundation is conducting a survey to learn which areas of science, care, and life with CF community members are most interested in learning about and discussing with peers. Results from this survey will help inform 2023 educational and connection opportunities, including virtual community conferences, research webinars, and other relevant content. To participate in this 5-minute survey, please clink on the link by Sunday, October 2nd at 11:59 p.m., ET. https://www.surveymonkey.com/r/XFQM38X?W4H6FHB=%5bW4H6FHB_CV 09/24/2022 - “The results will ...

Sep

CFFC Facebook Posts – September 2022 – Part 1

09/01/2022 - Durable coating kills COVID virus, other germs in minutes – While the title of this article refers to COVID, the research indicates the technique also kills MRSA which would make treated spaces safer for the CF community. 09/02/2022 - The Question Nobody Has Asked About My CF – By asking a unique question, this blogger has found a positive perspective on her life with CF. 09/03/2022 - All the Years Are the Good Years: On Making Peace With Time – Have you ever wished to could travel to the past to do something differently? This blogger has a counter argument to that type of wish. 09/04/2022 - CF Foundation Celebrates Passage of the Inflation Reduction Act – This news bulletin from the Cystic Fibrosis Foundation points to some specific benefits for the CF community in recent legislation. 09/06/2022 - Certain M. abscessus Variants Linked to Serious CF Lung Infections - The study of genetics can be applied to bacteria as well as humans. In this case, it may lead to more effective treatments. 09/07/2022 - Behind the Scenes of the Canadian Cystic Fibrosis Registry with Stephanie Cheng – While this article is about the Canadian CF registry, it does provide insight into the benefits of a comprehensive database. 09/08/2022 - Team developing oral insulin tablet sees breakthrough results – This research could be a game changer for the population dealing with CF-related diabetes. 09/09/2022 - Reducing Stigma Around CF – This blogger has been fortunate with the progress of her CF. That said, she is helping the entire community by sharing accurate and current information about the disease. 09/12/2022 - Newly Identified Defect Adds to Hyperinflammation in CF Lung Cells - This study indicates that an additional mutation may affect degree of inflammation in CF lungs. 09/14/2022 – 2022 Golf Results – CFFC hosted another successful golf tournament to raising money for our programs. 09/15/2022 - Manuka honey could help clear deadly ...

Sep

2022 Golf Results

A bright sun indicates happiness and, on September 10th, we had both. The sun was shining brightly on Southern Meadows Golf Club and nineteen golfer were happy to be there. After enjoying hot coffee and breakfast snacks, the crowd embarked on 9 holes of scramble format golf. The course was in great condition, the carts ran quiet and smooth, and cheers for good shots could be heard everywhere. Thanks to the generosity of the Golf Sponsors 2022, everyone went home with a prize. While the enjoyment was equally shared, the scores did produce an order of preference for the prize table. First trip to the prize table was earned by the team with the youngest players: Kevin Wetmore, Tom Skavienski and Tom's children Noah and Maddie. With a tie breaker, Ian Anderson, Terry Hine and Bruce Oliver had the second selection. Old college buddies Gannon Fitzpatrick, Jeff Goldberger, Allan Mason and Greg Smith made the third trip. Fourth to visit the table was the team of Dan Sullivan, Jamie Romeo, Jim Fetzner and Kristen Shaw. Donna Burke, Karen Bowlby, Jackie Goldberger and Sue Smith cleared the table. Prizes for "closest to the pin" went to Greg Smith for hole 2 and Jim Fetzner on the 9th hole. The real winners, of course, are the members of the local CF community. This year's tournament raised over $2,400 to fund CFFC's programs. For that, we are thankful for our players and our sponsors. We also owe a big thanks to our hosts Mike and Molly Clawson, and to Rick Clawson for cooking the fillets to perfection.

Sep

CFFC Facebook Posts – August 2022 – Part 2

08/16/2022 - “There are lots of things that come with having CF, but the financial burden was one that I never saw coming”: Kate’s story – In addition to the physical and psychological challenges, life with CF has other hurdles like the extra financial burden.mutations 08/17/2022 - People With CF Are Living Longer. What Does That Mean for Our Care? - This interview with the senior director of clinical affairs at the CF Foundation discusses the future of CF care. 08/18/2022 - Frailty Index for Lung Transplant CF Patients Helps to Predict Outcomes – Science again supports what seems intuitive. The good news is that this reports recommends the frailty index be used to initiate interventions to address vulnerabilities (rather than precluding transplant). 08/19/2022 - Cystic fibrosis: Causal treatment suitable from childhood – Trikafta has been available to children in the US. This study paves the way to extend the use in Europe. It may be old news but the methodology is interesting. 08/20/2022 - CFFC's Annual Financial Report 2022 – While it may not be as exciting as scientific discovery, some people are interested in the finances of the organizations with which they interact. If you are so inclined, you can learn about the money side of CFFC in the linked article. 08/21/2022 - A Letter to Myself – Have you ever been asked “What you would tell your younger self?” This blogger did just that and paints a wonderful picture of how perspective has changed in the last 20 years. 08/22/2022 - eRF3a Protein May Be Target in Treating CF Nonsense Mutations – This study is evidence that the search continues for treatments benefiting all CF mutations. 08/23/2022 - Immune cell model paves way for new treatments targeting common infection amongst immunocompromised children – Understanding the enemy is part of the strategy to defeat the enemy. 08/24/2022 - A New Model of Lung Disease Paves the Way for Personalized Treatments - Advances in biotechnology bringing us closer to tailored medicines, 08/25/2022 –