News

Sep

Pain and Symptom Management Survey

Cystic Fibrosis Foundation is seeking input on issues relating to pain ans symptom management. Here is their announcement. In preparation for the upcoming Palliative Care: Pain and Symptom Management Guidelines, sponsored by the CF Foundation and chaired by two researchers, one from the University of North Carolina and one from Emory University, a survey has been developed to help us better understand the pain and symptom management needs of individuals with CF. We are asking adults with CF, caregivers of individuals with CF, and CF care team members to respond to participate in this anonymous survey. The results of this research study will be used to help us develop guidelines to improve pain and symptom management for people with CF. To help inform the scope of these guidelines and participate in this 10-15 minute survey, please click on the link below by Thursday, October 15th. Take Survey Please note that your identity will not be linked to your response as identifying information will not be collected during the survey. You will be asked about your experience with and practice patterns around pain and symptom management, and you may choose not to answer any or all questions. Completion of the survey implies your consent for participation in this research study.  Please contact communityvoice@cff.org if you have any questions, and please feel free to share this opportunity with others in the CF community that might be interested by using the buttons found at the bottom of this email. Many thanks for your time and your contributions to the care of individuals with CF! Best Regards,Elisabeth Dellon MD, MPHProfessor; Medical Director, Children’s Supportive Care Team; Director, UNC Cystic Fibrosis CenterDivision of PulmonologyDepartment of PediatricsUniversity of North CarolinaDio Kavalieratos, Ph.D.Associate Professor & Director of Research and QualityDivision of Palliative MedicineDepartment of Family and Preventive MedicineEmory University Sarah Hempstead, MSPractice Guidelines ManagerClinical AffairsCystic Fibrosis Foundation

Sep

Vote Safely in 2020

In recognition of the policy issues that may have a significant impact on the CF community, Cystic Fibrosis Foundation is offering information on those issues as well as guidance avoiding health risks while exercising your right to vote. Their announcement, including useful links, follows. Exercising your right to vote is an important way to advocate for people with cystic fibrosis. While participating in the 2020 General Election may look different this year due to COVID-19, you can follow these simple steps to stay safe while making your voice heard:  Make sure you are registered to vote Learn your state’s processes and deadlines for safe voting, including options to vote by mail LEARN MORE ABOUT HEALTHY VOTING Before you cast your ballot, familiarize yourself with the issues that matter to the CF community, including: Safeguarding protections for people with pre-existing conditions Maintaining strong funding for groundbreaking research and drug development Extending paid family and medical leave to high-risk individuals during COVID-19 Broadening access to telehealth services It's important to ask questions of candidates to understand how their positions would impact the CF community. SEE THE ISSUES THAT MATTER Regardless of the election’s outcome, the CF Foundation will continue to advocate tirelessly with and for the CF community until CF stands for Cure Found.  

Sep

CF Foundation October Events

Cystic Fibrosis Foundation is sponsoring several events in October. The Western New York Chapter provided the following details. Each event is also listed on the CFFC calendar. Oct 2, all day: ROSE UP ROSE UP is a virtual fundraising event created and led by adults with cystic fibrosis to bring the CF community together and ROSE UP for a cure. Our goal is to have 650 people from all 50 states register to ROSE UP with us to help us get one step closer to our collective dream - a cure for all people with CF. To learn more, visit: https://events.cff.org/ROSEUP Oct. 3, 10am: Great Strides Virtual Celebration Western NY/Rochester Chapter’s celebration of our virtual Great Strides efforts in 2020.  A Facebook Live event, join by visiting the CFF-WNY Facebook page. Oct. 6, 7pm: Together Now, A 65 Roses Challenge Celebration Registration is open for Together: Now!  On Tuesday, October 6 at 7 p.m. ET (4 p.m. PT), members of the CF community and legendary athletes will share their inspiring stories, and we will celebrate the many ways people with CF and their loved ones have tackled the 65 Roses Challenge to help us advance our mission To register, visit: https://community.cff.org/vlc/ October 14, 7pm: CFF Cares CF Foundation Cares is a casual gathering where those who are caring for people with cystic fibrosis can find support by connecting with fellow members of the CF community. The agenda for this virtual conversation is to share thoughts and experiences around school-age children and returning to school.  How are families adapting to the new year?  Are there questions that might be answered by other CF parents/caregivers?   Are there lessons learned or observations to share? CFF Cares is not a counseling session.  It is a place to have candid conversations, make lasting friendships, and discover new ways to navigate the CF journey. It is a place of encouragement and hope. To register: https://engage.cff.org/WNY-Rochester October 21-23: NACFC The North American Cystic Fibrosis Conference provides a collaborative and educational forum for all CF professionals.  The educational elements of the meeting program are targeted ...

Sep

CFFC Facebook Posts – September 2020 – Part 1

09/01/2020 - Preventing infection, facilitating healing: New biomaterials from spider silk – Science is a fascinating thing; especially when benefits come from unusual sources. [BTW: Think twice before you kill a spider.] 09/02/2020 - Transplant Anniversaries Acknowledge Trauma and Triumph – Transplantation affects your emotional well-being as well as your physical well being. 09/03/2020 - Two Years Ago This Week, I Decided My Life Needed to Change – Gunnar Esiason's story suggests that this time of disruption may be an opportunity to consider where you go from here. 09/04/2020 - Choosing Kindness Over Anger – This blogger tells us that attitude matters. 09/05/2020 - Vertex Seeks to Expand FDA Approval of CFTR Modulators to Include More Mutations - Extending the the approved use of existing CFTR modulators to more mutations is consistent with the “no one left behind” strategy for CF treatments. 09/06/2020 - New Technology Could Improve Detection of Biomarkers for CF, Other Diseases – CF research has benefited from findings relating to other diseases. This article points to a situation where Findings intended for CF may benefit research on COVID19. 09/07/2020 - Research survey for rare disease patients and their families about impacts of COVID-19 – Research funded by NIH is seeking to document the impact COVID-19 is having on individuals with rare disease (which includes CF). 09/08/2020 - CF Prepared Me for Isolation, But Not Homeschooling – As schools reopen in NY, this blog may resonate with you. 09/09/2020 - Exploiting the weak spots in M abscessus to design new antibiotics – This article describes an exciting development in the battle against resistant bacteria. 09/10/2020 - Emergency Fund – CFFC can help meet immediate needs when you run short of money. Check out the details of our Emergency Fund program for families served by the Rochester CF Center. 09/11/2020 - Savara Closing Trial of Molgradex in Treating NTM Lung Infections in CF Patients – With all of the attention given to ...

Sep

Survey Opportunity: COVID-19 Vaccine

Cystic Fibrosis Foundation is seeking input from the CF community regarding the potential COVID-19 vaccine(s). Here is their call for participation. The CF Foundation is committed to advocating for the best care for the CF community throughout the COVID-19 pandemic. Research and development for a COVID-19 vaccine is underway and clinical trials are ongoing. As we get closer to the possibility of a COVID-19 vaccine we are interested in learning more about how people with CF, their families and CF care providers are thinking about potential vaccines. Please take this short, 6 - 8 minute survey to help inform our advocacy and education efforts moving forward. Please complete the survey by Friday, September 25th by clicking on the button below. Take the Survey Please contact communityvoice@cff.org if you have any questions or concerns. Thank you for your time and consideration; we greatly appreciate your input! Best, Mary Dwight Chief Policy and Advocacy Officer

Aug

CFFC Facebook Posts – August 2020 – Part 2

08/16/2020 – Living with CF Golf Tournament - This year's Living with CF Golf Tournament has a special meaning. The COVID-19 protocols - masks and social distancing - give us a little insight in to precautions people living with CF take with or without a pandemic. NOTE: The tournament has been canceled. 08/17/2020 - Research May Explain Why Different CF Bacteria Infect at Certain Ages – This research provides understanding in the progression of bacterial infections. 08/18/2020 - There’s No One Correct Way to Disclose Your CF – A couple of days ago, we shared Gunnar Esiason's approach to talking about his CF at college. This blog shares how Emily Apakian handled the issue. 08/19/2020 - Research Blast on... Antimicrobial Resistance – This article describes how the UK is fighting resistant bacteria. 08/20/2020 - Survey Opportunity: Your Health Information – Accessing – and understanding – data about your health is a key part of being a full partner in your health care. Share your views on this topic with CFF. 08/21/2020 - MS1819-PERT Combo Shows Benefits for CF Patients With EPI in Phase 2 Trial – Digestive issues are a significant part of life with CF. This study promises improved fat absorption with a supplement to pancreatic enzymes. [Does it strike you as fitting that the trials are taking place in Hungary? ;-) ] 08/22/2020 - What I Wish Colleges Would Understand About Reopening – One more view of CF college life during the pandemic. 08/23/2020 - Cystic fibrosis: Why so many respiratory complications? - This research from Switzerland indicates that a protein over-produced in CF can make airways more bacteria-friendly. 08/24/2020- How to Gain Weight: 7 Less Traditional Methods – Whether or not you need to gain weight, you might find some of the suggestions in this blog useful. 08/25/2020 – The 2020 Living with CF Golf Tournament has been canceled. We did not receive enough registrations to produce a viable event. 08/26/2020 - Curing genetic disease ...

Aug

Clinical Trial Alert – August 2020

Cystic Fibrosis Foundation issued the following clinical trial alert on August 24, 2020. Study to evaluate the effects of CFTR modulators in infants and young children (BEGIN) Status: Enroling Description: This two-part observational study will look at the effects of CFTR modulators on growth in infants and young children with CF. These drugs are intended to help CFTR protein function closer to normal. Age: 0 Years to 6 Years Mutation: No Mutation Requirement Fev1% Predicted: No FEV1 Limit Number of Visits: 6 Length of Participation: 3 years ClinicalTrials.gov link: https://clinicaltrials.gov/ct2/show/NCT04509050

Aug

CFFC Facebook Posts – August 2020 – Part 1

08/01/2020 - With School Reopening, How Do I Know I Can Trust My Classmates? - Gunnar Esiason shares his thoughts on the prospects of returning to school (including an extrapolation to elementary and high school). It's likely that his thoughts are close to yours. 08/02/2020 - 'Drawn-on-skin' electronics offer breakthrough in wearable monitors – Another research report that is not directly related to CF; however, the advances in remote collection of health data is has great potential for individuals who live far from their care providers or need to avoid contact with other patients. 08/03/2020 - The Grief of Living With CF Needs to Be Felt – This blogger explains how her career in social work brought deeper understanding of the role isolation plays in CF mental health. 08/04/2020 - Thread-based Wearable Device May Help Diagnose, Monitor CF and Other Conditions – This research points to another option for non-invasive collection of health data (see August 2nd post), This one is more directly associated with CF. 08/05/2020 - Patient and Family Participation in Clinical Guidelines Development: The Cystic Fibrosis Foundation Experience – Cystic Fibrosis Foundation has received recognition for its approach to community inclusion in the development of care guidelines. 08/06/2020 - Access to medicines starts with clinical trials – This article from UK's Cystic Fibrosis Trust provides a good overview of the progression of CFTR modulator approvals, including a pitch for participation in clinical trials. 08/07/2020 - Choosing My Health Over My Livelihood – The pandemic creates a lot of tough choices. 08/09/2020 - Diagnosis Privilege Can Be a Form of Discrimination – A reminder of how lucky some of us are even as we battle the challenges of CF. 08/10/2020- One Month to 2020 Living with CF Golf Tournament – It's getting close. Time to sign up! 08/11/2020 - Nutrition leaflets – Cystic Fibrosis Trust (UK's CF Foundation) produced a series of 20 leaflets that provide information on a wide array of gastrointestinal issues ranging from “nutrition and pregnancy” to “post lung-transplant-nutrition.” 08/12/2020 - Mental Health During COVID-19 – The mental health concerns associated with CF can be amplified by the pressures added by ...

Aug

Survey Opportunity: Your Health Information

Cystic Fibrosis Foundation is gather your views on health data. The survey also includes an opportunity to volunteer for a working group on the topic. Here is the announcement from CFF Community Voice: The CF Foundation’s recent strategic plan highlighted the importance of high quality data and evidence to ensure that people with CF get the best possible health care.  As part of the work on this area of focus, we are deploying this survey to learn about:  How your health data is shared with you in clinic and your preferences around data sharing   Current practices for tracking your health at home and your willingness to share that data How you learn about CF and CF research and areas for improvement  Please consider taking this 4-6 minute survey by clicking the button below. Survey takers will also have the opportunity to apply for the Data Use & Evidence Generation Working Group which is actively involved in addressing this component of the strategic plan. The survey will close on Thursday, August 27th.   Take the Survey   If you have questions about this opportunity, please emailcommunityvoice@cff.org. Thank you for your time and consideration. Best,Aliza FinkSenior Director of Real World ResearchCystic Fibrosis Foundation

Aug

One Month to 2020 Living with CF Golf Tournament

We're looking forward to the 2020 edition of the CFFC Living with Golf Tournament. It's a little more than a month away - Saturday, September 12th. With all of the programs that have been postponed due to the COVID-19 protocols, we believe the tournament offers the safe exception to the events that support the CF community. The standards for golf include wearing masks where golfers gather and maintaining safe distances while golfing. We will also take precautions with our food services (pre-packaged snacks at check-in, boxed lunches after the game). You can get all of the tournament details in the CFFC Golf Brochure_2020. The brochure also includes an entry form. We recognize that our community is being appropriately cautious. If you want to support CFFC but are uncomfortable with group activities, we will gladly accept your donations in lieu of participation.