Third Annual CF Roundtable Gratitude Dinner

On October 17th, during the NACFC conference in Denver, CO, CF Roundtable (USACFA) hosted a dinner event honoring 68 social workers and other CF Care team members.

It was hosted by our very own Beth Sufian, JD and an informative presentation was given by Isabel Stenzel Byrnes.

The evening ended with a Gratitude Ceremony recognizing the importance of the CF team members to the health and well being of people with CF. Many attendees said the evening was the highlight of their attendance at NACFC.

Halloween themed goodie bags were handed out to each attendee, which contained a tote bag, with a lung design created by our talented director, Ella Balasa.

A big thanks to everyone who attended!

We have a limited number of totes remaining. This #givingtuesday be one of our first donors and you can recieve one of our very limited edition totes when you donate $100 or more to CF Roundtable! First come, first served basis!

 

Have you talked to your CF Team about your sexual and reproductive health?

By: Georgia Brown

I often say that there is no modesty in medicine.  I mean, we routinely talk with medical professionals who are used to gross anatomy.  But I realized I was wrong when I broached sexual and reproductive health (SRH) issues with my CF physician.

After I attended the CFF MiniCon on SRH, I was so energized by the honest discussions that I had handwritten notes to share at clinic the next day.  After giving an overview of the event, I listed items clinics should be talking about and offered my notes for use as a reference. Continue reading Have you talked to your CF Team about your sexual and reproductive health?

Hooray! I Celebrated My Fifth Anniversary – Guest Blog by Kathy Russell

October 3rd, 2018, I celebrated five years since having bilateral mastectomies because of cancer. I have had no recurrence of those cancers and no chemo or radiation therapy. Since I am 74 years old and have CF, I feel very fortunate.

My surgeon would have done just a lumpectomy on the left side, where the initial tumor was found, but I opted for removal of both breasts. I didn’t want to have any more surgeries. If I could have had reconstruction surgery at the time of my mastectomy, I might have opted for that. However, since my surgeon and the plastic surgeon both said that was not an option, I chose to get rid of the whole possibility of future trouble by removing both breasts. Continue reading Hooray! I Celebrated My Fifth Anniversary – Guest Blog by Kathy Russell

CF Foundation asking for Public Comment on Lung Transplant Referral Guidelines

Dear CF Community,

The CF Foundation seeks your input on the draft of the Lung Transplant Referral for Individuals with Cystic Fibrosis: Cystic Fibrosis Foundation Consensus Guidelines. This guideline is one in a series of guidelines for advanced stage lung disease; the other guidelines in progress on this topic include: Advanced Lung Disease Consensus Guidelines and Post Lung Transplant Consensus Guidelines.

A committee of CF health care providers, transplant healthcare providers, and an adult with CF researched and developed the consensus recommendation statements presented in the draft. It is our hope that you will add your input and feedback to ensure that our community issues actionable practice recommendations for lung transplant referral for individuals with cystic fibrosis.

To systematically collect feedback from the CF community, we have created an on-line tool which is linked below. We recommend that you review the attached document, Lung Transplant Referral for Individuals with Cystic Fibrosis: Cystic Fibrosis Foundation Consensus Guidelines PDF, and use the link below to enter your comments.

Submit comments here: https://www.surveymonkey.com/r/LTxReferralPublicComment

The deadline for comments is Wednesday, October 10th, 2018, 5:00 PM, Eastern.

We value your input. Thank you in advance for taking time to review and provide us with feedback on this very important aspect of CF care.

If you have any questions, please contact shempstead@cff.org.

Sincerely,
Albert Faro

Albert Faro, M.D.
Senior Director of Clinical Affairs
Cystic Fibrosis Foundation | National Office

Two more weeks to apply for our LMK Scholarship! Due October 15th.

CF Roundtable offers the Lauren Melissa Kelly (LMK) Scholarship award each semester, in honor of Lauren Melissa Kelly. The academic scholarships of up to $2500 are awarded to adults with cystic fibrosis who are pursuing career certifications, associates, and bachelor and graduate degrees. Spring 2019 applications due on October 15th, 2018.  Continue reading Two more weeks to apply for our LMK Scholarship! Due October 15th.

Patients Will Test Digital Platform to Manage CF-Related Diabetes (CFRD)

By Janet Stewart

Attain Health will partner with DarioHealth, a digital health and big data solutions company, to test its Dario Engage platform to monitor blood sugar levels in cystic fibrosis (CF) patients with CF-related diabetes (CFRD). Attain Health provides integrative health coaching for CF patients.

CFRD is an unusual form of diabetes estimated to affect some 30,000 CF patients in the United States and 70,000 worldwide. Experts say that the hyperglycemia (high blood sugar levels) seen in CFRD patients results in higher rates of bacterial lung infections, and an increased risk of death.

“Effective diabetes management in cystic fibrosis patients is critical, as there is a sixfold increase in mortality among cystic fibrosis patients who have diabetes as compared to those who don’t. The increased risk of mortality from lung infections is correlated with hyperglycemic events,” Kat Quinn Porco, founder of Attain Health, said in a press release.

The three-month pilot study will include real-time tracking of 12 patients with CFRD using the Dario Engage digital platform, which includes a blood sugar monitoring device that transmits readings to the clinic. Attain Health will pay for access to the Dario Engage Dashboard to monitor participants.

The app is designed to help clinics detect blood sugar trends that could lead to disease progression. Disease management is also expected to be improved by DarioHealth’s ability to provide health education content via the app.

“We are very excited to move forward with DarioHealth in exploring the benefits of digital health solutions for patients living with cystic fibrosis. We chose to work with DarioHealth because of their platform’s patient-centric approach, ease of use, real-time actionable data, and their very favorable reputation in the diabetes market,” Porco said.

The companies plan to jointly present preliminary findings at the North American Cystic Fibrosis Conference Oct.18-20 in Denver. Final results are expected in December.

Attain Health plans to obtain grant money for continuous use of the DarioEngage program with up to 200 patients a year.

“By piloting this study in partnership with Attain Health, DarioHealth is taking a leadership position in addressing CFRD by deploying what we believe are the best digital health management tools on the market today. This agreement and pilot study mark DarioHealth’s foray into chronic disease treatment markets that overlap with and expand beyond the treatment of diabetes, our company’s first treatment indication,” said Erez Raphael, president and CEO of DarioHealth.

Original article here.

Pushing Through the Fear – Guest Blog By Andrea Eisenman

By Andrea Eisenman

So many fears, where do I begin. Let’s start with my impending trip to Seattle from NYC. I like to travel but it gets complicated. How much room in my suitcase do I have to pack my myriad of machines and meds? And how much will I forget, despite my thorough list? I learned I had to put obvious things on my list like a hairbrush after I forgot that a few times. But when it is easily purchased at a drug store, no biggy. When it is my immune suppressants or a nebulizer, that is harder to replace.

I now have a lot more machinery to tote around when I leave home. I have my CPAP, my percussor and my inhalation machine and a facial steamer for my sinuses, plus my Neti pot for nasal lavage. These things become cumbersome and traveling light is not an option, I have to check my bag. So, planning is key for several days prior to take off. I am in that phase now. Packing it all. I bring enough meds for twice my travel time. My last trip to Seattle happened during 9/11. I could not fly home for a week. Luckily, I had an extra 10 days of medications to cover me.

My dad asked if I was up to the flight, it is a longer one than I have taken in many years. My answer is, I don’t know. I am fearful as I know I have lymphedema and even though I wear compression tights when I fly, it is less than comfy and I will swell in my upper body. I do have a compression machine for upper body swelling but it is way too big to bring. Will I be ok not using it for a few days? I am hoping the answer is yes. But because I do not know these things for certain, I have anxiety. And I worry I might get sick either from the flight or anytime during my trip. I do wear a mask in flight and try to stay as hydrated as possible in order to keep well. And of course, I will wipe down the area near my seat with cleaning wipes.

But in order to live a life, I have to take some risks. I had wanted to go to Seattle for a few years. It is therapeutic to get away once in a while and I had not traveled too far from home while my mom was alive. I wanted to be near enough if she needed me. I no longer have that worry. And maybe I used that as an excuse so I am now pushing myself to go on this trip. I know I can be resourceful and my doctors are only a phone call away if I get sick. There is a great CF center there and my friend is sensitive to my CF needs. When we were in college together she gave my CPT when I let her.

I find that when I push myself beyond my fears, I feel triumphant and am happy that I conquered them. Sometimes one has to get out of their comfort zone, even if it means wearing horribly tight pantyhose for six hours on a flight! I know it will be worth it and I can bond with my friend. I will feel like I accomplished something worthwhile. Maybe my next trip will be to Europe.

Cystic Fibrosis Podcast 195 Summiting Mount Everest and Denali with Nick Talbot

In the latest CF Podcast, Nick Talbot shares his incredibly unique journey with cystic fibrosis. From being diagnosed at the age of 13 to his latest climb – a trek up Denali, the highest point in North America – he constantly challenges himself to reach for his dreams. Nick stresses the importance of pushing one’s own personal limits and never being scared to fail – because failure simply means you tried.
Tune in to learn more about Nick and his cystic fibrosis story.

This video podcast was made possible through an unrestricted educational grant from Novartis to the Boomer Esiason Foundation.

Apply Now for Our LMK Scholarship! Due October 15th

CF Roundtable offers the Lauren Melissa Kelly (LMK) Scholarship award each semester, in honor of Lauren Melissa Kelly. The academic scholarships of up to $2500 are awarded to adults with cystic fibrosis who are pursuing career certifications, associates, and bachelor and graduate degrees. Spring 2019 applications due on October 15th, 2018. 

Nancy Wech, Lauren’s mother, established this scholarship in Lauren’s name and memory. In Nancy’s own words:

Lauren Melissa Kelly was an extraordinary woman. Laughing, gregarious, spontaneous, fun, talkative, driven, thoughtful, smart, kind and loving — all descriptive terms for Lauren, who lost her battle with CF late in her senior year at the University of Georgia. In 1992, Lauren was chosen as one of ten Senior Leaders at University of Georgia. She had distinguished herself as a member of the Golden Key Honor Society, Mortar Board, Phi Upsilon Omicron, Gamma Beta Phi, the Tate Society and Delta Gamma sorority.

Lauren felt the most significant opportunities of her college career included participation in the reconstruction and formation of organizations, which will serve the university in the future. She acted as one of the re-founding members of the Phi Kappa Literary Society and was significant in the metamorphosis of the Z Club into the William Tate Society. Her other activities included Greeks Advocating Mature Management of Alcohol (GAMMA) in which she served as Secretary and Special Events Chair. She was also a member of the Women’s Glee Club for more than two years.

In recognition of her academic performance, Lauren’s degree of Bachelor of Science in Family and Consumer Sciences was awarded posthumously. At the time of her death, Lauren was engaged to be married and living off campus in an apartment. She lived life to the fullest!

Walt Disney said, “Don’t cry because it’s over, smile because it happened. It’s not the days in life you remember, it’s the moments.” As Lauren’s mother stated, “I smile because she happened to me. Now, I want you to smile because she has happened to you.”

Please visit our website for application and full scholarship criteria and details. http://www.cfroundtable.com/community-outreach/united-states-adult-cystic-fibrosis-association-scholarship/

Send any questions to scholarships@usacfa.org.

Public Voting is Open for Thriving Student Awards

Earlier this year, 40 AbbVie CF Scholars were awarded $3,000 based on their academic excellence, creativity and community involvement/extracurricular activities.

The public is now invited to vote for students to help determine this year’s Thriving Undergraduate and Thriving Graduate Students.

Now in its 26th year, the AbbVie CF Scholarship program has awarded more than $3.2 million to deserving students living with CF.

There are two easy ways to vote*:
  • Visit www.AbbVieCFScholarship.com and follow the instructions
  • Text “VOTE[ID]” (i.e. VOTE1) to 31901 using the personalized ID code provided for each specific scholar

*Please note: Individuals can place only one vote for a Thriving Undergraduate and one vote for a Thriving Graduate Student either online or via text message.

AbbVie, a research-based global biopharmaceutical company, today announced its annual call for the public to vote for students living with cystic fibrosis (CF), an inherited chronic disease that affects the lungs and digestive system, as part of its 2018 Thriving Student Scholarship. Scholarships totaling $25,000 each – the Thriving Undergraduate Scholarship and the Thriving Graduate Scholarship – will be awarded to two deserving students.

From today through September 19 at 11:00 AM EDT, the public is encouraged to visit the AbbVie CF Scholarship website (www.AbbVieCFScholarship.com) to learn more about this year’s AbbVie CF Scholars and review their online profiles to cast a vote to help determine the 2018 Thriving Undergraduate and Thriving Graduate Students. The public can vote online or via text message by texting the student’s personalized ID code to “31901” during the two-week voting period.

“I have always dreamt of becoming a child psychologist, and thanks to the AbbVie CF Thriving Graduate Scholarship, I have been able to focus more on my studies and less on the stresses that come with paying for my education,” said Taylor MacLean, 2017 AbbVie CF Scholar and Thriving Graduate Student. “I want to let other students living with CF know that despite the challenges, achieving your goals is possible, and I’m grateful that the AbbVie CF Scholarship, along with my family and care team, has allowed me to do so. Being acknowledged for my work and determination has helped me realize my full potential.”

Earlier this year, AbbVie selected 40 undergraduate and graduate students living with CF to each receive a $3,000 AbbVie CF Scholarship for use during the 2018-2019 academic year based on their academic excellence, creativity and community involvement/extracurricular activities. These AbbVie CF Scholars now have the opportunity to earn the title of 2018 Thriving Undergraduate or Graduate Student along with an additional $22,000 in scholarship funding for use toward their dreams of higher education. The Thriving Undergraduate and Graduate Students will be determined based on a combination of their academic achievements, community involvement/extracurricular activities, essay and creative presentation scores, as well as the number of public votes cast.

“Students living with CF inspire us every day. They are true fighters who don’t let their diagnosis hold them back from making a difference – whether it’s in the classroom or in their community,” said John Duffey, vice president, U.S. Specialty, AbbVie. “AbbVie has been proud to show our commitment to students with CF and their families by carrying on the AbbVie CF Scholarship tradition for more than 25 years.”

During the voting period, the public can show their support for the AbbVie CF Scholars by tweeting the link below. AbbVie will announce the 2018 Thriving Undergraduate and Graduate Students in October.

Click to Tweet: Students living with #cysticfibrosis need your help! Cast your vote to help award two $25K scholarships and determine the 2018 AbbVie CF Scholarship Thriving Undergraduate and Graduate Students https://bit.ly/TnPPq1

About Cystic Fibrosis

Cystic fibrosis (CF) is an inherited chronic disease that affects the lungs and digestive system of those living with this condition.1 In patients with CF, a thick, sticky mucus is produced in certain organs throughout the body, most commonly the lungs and digestive system. The mucus build-up in the lungs can cause difficulty breathing and may lead to life-threatening lung infections. In the digestive system, the thick mucus may prevent proper food digestion, potentially leading to malabsorption and malnutrition.

About the AbbVie CF Scholarship

The AbbVie CF Scholarship was established 26 years ago in recognition of the financial burdens many families touched by CF face and to acknowledge the achievements of students with CF. Since its inception, the scholarship program has awarded over $3.2 million in scholarships to over 1,000 students. The AbbVie CF Scholarship is part of AbbVie’s ongoing commitment to the CF community, which is comprised of more than 30,000 people in the United States. As of 2016, more than half of the CF population are 18 years or older.1

It is not necessary for scholarship applicants to have taken, currently take, or intend to take in the future, any medicine or product marketed by AbbVie, and this is not a consideration in the selection criteria. More information about the AbbVie CF Scholarship criteria and application can be found at www.AbbVieCFScholarship.com.

About AbbVie

AbbVie is a global, research and development-based biopharmaceutical company committed to developing innovative advanced therapies for some of the world’s most complex and critical conditions. The company’s mission is to use its expertise, dedicated people and unique approach to innovation to markedly improve treatments across four primary therapeutic areas: immunology, oncology, virology and neuroscience. In more than 75 countries, AbbVie employees are working every day to advance health solutions for people around the world. For more information about AbbVie, please visit us at www.abbvie.com. Follow @abbvie on Twitter, Facebook or LinkedIn.

References

  1. Cystic Fibrosis Foundation. About Cystic Fibrosis. Diagnosis and Genetics. Available at:https://www.cff.org/What-is-CF/About-Cystic-Fibrosis/. Accessed September 2018.