Author Archive

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.

Jul

Booster Jots

When things are happening around you - happening to you, any control you can exercise will boost your spirits. That's the basic idea behind Booster Jots. Learn about the concept and how to use it at BoosterJots.com. The concept was developed by Kori Tolbert Doherty through her own experiences. Read about her journey from self-help to sharing this empowering strategy by clicking "Kori's Story" in the menu bar at the top of the Booster Jots site. A link to Booster Jots has been added to our Information Resources, Life with CF page under the "Brighten the Day" heading.

Jul

CFFC Facebook Posts – June 2016

For those of you who don't follow CFFC on Facebook, here are the original posts made to our page during June 2016. 06/01/2016 – BEF Announces Collaboration with Johnson & Johnson for First of its Kind TRU Heroes Nursing Program - This is a promising program since nurses have the most contact with CFers during hospitalizations. 06/02/2016 - Empowering my Daughter to Take Charge of her CF Care – Letting go can be hard. Seeing an empowered child is the reward. 06/03/2016 – 5 Facts About Cystic Fibrosis and Reproduction – Increases in CF life expectancy bring about other expectations, such a having children. This article summarizes some key facts. 6/05/2016 - CF Podcast 155: CF Airway Clearance Options – A video from Gunnar Esiason about his preferred airway clearance. 06/07/2016 - Study Finds How Certain Bacteria Evolve in Lungs of Cystic Fibrosis Patients – An adage in the study of organizational behavior says that, in order to change a “problem,” you have to understand the root cause. This research finding could lead to more effective treatments for bacterial infections. 06/09/2016 - Why I Celebrate My Son’s CF Milestones – Erin's CFF Community Blog stimulates the memory of “the worst day of our lives” but it also reminds us that there is so much more to celebrate. 6/10/2016 - 18 Hospital Hacks – Some of the references are obviously to products used in the UK, but you can still get the gist of the ideas. 06/11/2016 - Yeast Models Suggest New Ways of Restoring CFTR Function in Lungs of CF Patients – More basic research that could pave the way to improved treatments. 06/13/2016 - What I’ve Learned About Care as a CF Patient and Hospital Administrator – This CF Community Blog is reminiscent of Education Day when Tiffany Christensen explained the insights she has gained by being a patient working in health care. 06/14/2016 - Promising Phase 1Trial on POL6014 for Cystic Fibrosis Finished – First of two companion posts. This article discusses the positive results in a safety and effectiveness trial for the drug POL6014 which is intended to reduce lung tissue damage. 06/14/2016 - Neutrophil elastase inhibitor POL6014 ...

Jul

Clinical Trials – June 2016

The CFF provided information on the following clinical trials: 06/14/2016 - TEACH: Testing the effect of adding oral azithromycin to inhaled tobramycin in people with CF This study will look at the effect of adding oral azithromycin to inhaled tobramycin. During the first part of the study, participants will take either oral azithromycin or a placebo in addition to their inhaled tobramycin. After completing the first part of the study, participants have the option to continue in an 8-week study extension. All participants in the extension will take oral azithromycin. Researchers will test the effect of adding oral azithromycin to inhaled tobramycin by measuring changes in lung function. This study is for people with CF who are chronically infected with P. aeruginosa and are taking inhaled tobramycin. All participants will continue to use their inhaled tobramycin cycled on/off every 4 weeks throughout the entire study. This study will require lung function tests. CFF listing: https://tools.cff.org/Display/dsp_ClinicalResearchHTML.cfm?id=432&CTSubId=137 Clinical Trials listing: https://clinicaltrials.gov/ct2/show/NCT02677701 06/28/2016 - Standardized Treatment of Pulmonary Exacerbations II (STOP2) Pulmonary exacerbations are treated with varying antibiotics for varying time periods based on individual needs determined by patients, their families and care providers. This study will look at the safety and effectiveness of three different lengths of IV antibiotic treatment for pulmonary exacerbations. Participants who respond early to IV treatment will receive antibiotics for 10 or 14 days. Those who do not respond early will receive antibiotics for 14 or 21 days. Researchers will study the effectiveness of different IV treatment lengths by measuring changes in lung function. This study is for people with CF who experience a pulmonary exacerbation and are planning to receive IV antibiotic treatment. This study may require lung function tests and/or other measurements. CFF listing: https://tools.cff.org/Display/dsp_ClinicalResearchHTML.cfm?id=455&CTSubId=138 Clinical Trials listing: https://clinicaltrials.gov/ct2/show/NCT02781610

Jun

Applied Education Day

This year's CF Education Day was not only a learning experience; it was also an opportunity to apply what we learned. The event was structured as a three-part workshop modeled on TeamSTEPPS, a teamwork system designed for health care professionals. Tiffany Christensen, our session leader, expanded the TeamSTEPPS scope to to include patients as well as professionals. The result was a program entitled "Patients as Partners: Creating Authentic Healthcare Teams through Shared Language." The first two segments of the program were dedicated to learning the key principles of TeamSTEPPS and gathering the participants' perspectives on the strengths, weaknesses, opportunities and threats in the current approach to CF care in Rochester CF Center. To promote openness and objectivity, separate introductory sessions were held for health care professionals (providers) and CF patients/families (community). The third segment brought providers and community members together to collaborate on specific action plans to implement selected TeamSTEPPS tools to enhance patient engagement in their care. Here are some highlights from the workshop sessions. Learning Patient Activation - To become full partners, patients need to evolve from passive recipients of care, past the stage of advocacy (reactive involvement) into patient activation (pro-active engagement). Patient activation is a behavioral concept defined as "an individual's knowledge, skill, and confidence for managing their health and health care." Tiffany shared the graphic to the right to illustrate the goal of patient activation. Engagement - Professional skill and patient activation will not produce effective care teams without mutual engagement. The care givers and recipients need to be equally engaged in a trusting and mutually respectful relationship. Communication - Clear communication, using shared language, provides a basis for building and sustaining an effective partnership. Key communication requirements are: Mutually understood structures for communications. The ability to speak up and stop a routine (e.g., clinic visit) or procedure (e.g., IV infusion). An environment of respect A flat hierarchy where individual skills and knowledge are recognized but no one person's perspective is superior to all others. Action Plans Tiffany kicked off the Saturday afternoon session with her observation that the providers and community had very similar perspectives on the current state of CF care. She also noted a high level of engagement in both groups. With that positive background, we got down to the work of developing specific plans for improvement activities. The participants broke into three work groups, each comprised ...

Jun

Cystic Fibrosis Tips n’ Tricks

Introducing another YouTube channel dedicated to life with CF - Cystic Fibrosis Tips n' Tricks. The link is to the home tab for Anne Barkley's channel; click the “Videos” tab to find her topics as they are added. This link has been added to our Information Resources, Life with CF page.

Jun

Cystic Fibrosis HealthWell Foundation

Paying for appropriate care is one of the many challenges faced by people living with CF. We have added a link to another possible source for financial assistance - HealthWell Foundation. According to their web site: The HealthWell Foundation provides financial assistance to eligible individuals to cover coinsurance, copayments, health care premiums and deductibles for certain medications and therapies. If you've been prescribed a medication and your insurance company covers it, but you still cannot afford the coinsurance or copayment required, we may be able to assist you by paying for part of your costs associated with the medication. Also, if you are eligible for health insurance, but cannot afford the insurance premium, we may be able to assist with your insurance premium. The HealthWell Foundation offers assistance to individuals dealing with a wide range of health issues. They have a program geared specifically to CF which you can find at Cystic Fibrosis HealthWell Foundation. According to their web site: The Cystic Fibrosis Fund is designed to assist eligible people living with cystic fibrosis with cost-shares associated with CF-specific treatments. In addition, HealthWell is also able to assist with the full cost of vitamins, supplements, hypertonic saline solution, nebulizers paired with treatments, and certain handsets. We are committed to supporting the CF community and the established guidelines around our covered product list are meant to focus on the areas of greatest need for the majority of people living with CF. We understand there are additional areas to be addressed and, over time, it is our hope to be able to expand our coverage even further. Please note that we are not able to assist with special requests outside of our covered product list at this time. The link to the Cystic Fibrosis HealthWell Foundation has been added to our Information Resources, Financial Assistance page.