The Cystic Fibrosis Reproductive & Sexual Health Collaborative (CFReSHC) Invitation to Participate

The Cystic Fibrosis Reproductive & Sexual Health Collaborative (CFReSHC) is a patient engagement project that provides women with CF the opportunity to be equal partners with healthcare professionals to shape the future of CF research.  CFReSHC offers women with CF the opportunity to participate on the Governance Board, Research Advisory Panel and Patient Task Force as Patient Partners to develop research projects that directly respond to the questions faced by women with CF.  CFReSHC holds monthly virtual meetings on topics that impact the lives of women with CF like contraception, family building, hormone influences on CF, incontinence and menopause.  As we enter our third year, CFReSHC is looking for women with CF who are passionate about sexual and reproductive health research to join our collaborative who can commit 4-6 hours a month and we provide  a small honorarium for your time commitment.

CFReSCH is looking for a:

  Social Media Strategist who has connections in the CF community or who is willing to engage with the CF community on our behalf.  CFReSHC currently has a social media presence on Facebook, Twitter and Instagram and the applicant would need to be able to post 2-3 times per week as well as check the platforms regularly and make responses as needed.  The applicant would need to attend 3 paid monthly meetings often held during work hours.

Grant writer and Coordinator who has connections in the CF community or is willing to connect with the CF community and engage it to seek out funding opportunities for potential grants.  The applicant would need to maintain a database of potential grant opportunities.  An applicant who has experience writing applications is preferred.  The applicant would need to attend 3 paid monthly meetings often held during work hours.

Women with CF are welcome to send a letter of interest to: cfreprohealth@gmail.com.  Together, we will respond to the health needs of the CF community by providing data for healthcare professionals to pave the way for improved sexual and reproductive health resources, healthcare, and knowledge.

Livestreaming of the North American Cystic Fibrosis Conference (NACFC)

North American Cystic Fibrosis Conference
Opportunity: Register Now for the Livestream Content
Dates: NACFC will be held October 18-20
The North American Cystic Fibrosis Conference (NACFC) brings together researchers and health care professionals from around the world to discuss the latest in cystic fibrosis research, care, infection, treatment, and drug development.
You can explore conference sessions along with the experts! Join us online for three livestreamed plenaries, follow-up Facebook Live Q&As with the speakers, and additional livestreamed workshops and symposia that were hand-selected by members of the CF community, including members of Community Voice. You will find the schedule for these sessions below. The plenary sessions are the major keynote sessions that are presented to all attendees. Each plenary will be followed by a Facebook live Q&A session with the plenary presenters.
During the third plenary session, keep an eye out for Community Voice Melanie Abdelnour, who will be sharing about the importance of partnering with her care team.
Additionally, you will have access to view the content from all other sessions where speakers have consented to share their presentations through the sync-to-slide feature 6 weeks after the conference. Stay tuned for more details!
Register now to livestream the plenaries, workshops, and symposia.
Thursday, October 18, 2018
  • Advancing Basic Science Toward a ‘One-Time’ CF Cure – 09:45 am – 11:05 am MT
  • Pro/Con: Current Debate in Pulmonary Treatments – 09:45 am – 11:05 am MT
  • Controversial Practices – Helpful or Harmful – 02:00 pm – 03:25 pm MT
  • Healthy Habits: Promoting Physical & Mental Health Through Sleep, Exercise, & Nutrition – 02:00 pm – 03:25 pm MT
  • Plenary 1: Improving Outcomes of Infections in the Age of CFTR Modulators – 04:30 pm – 06:00 pm MT (6:30-8 ET)
  • Facebook Live: Infection Research: Mission Possible,  6:30 pm MT (8:30 pm ET) 
Friday, October 19, 2018 
  • Plenary 2: Anti-inflammatories & Mucociliary Clearance Therapies in the Age of CFTR Modulators – 9:00 – 10:00 am MT (11:00 – 12:00 pm ET)
  • Facebook Live: Glad You Brought It Up: Mucus and Inflammation, 12:15 pm MT (2:15 pm ET)
  • The Changing Face of Pulmonary Exacerbation Treatment – 10:30 am – 11:55 am MT
  • Progress & Promise of the CFTR Modulator Pipeline – 10:30 am – 11:55 am MT
  • Novel Approaches to Modulate CFTR – 02:00 pm – 03:20 pm MT
  • Nutrition Research – 02:00 pm – 03:20 pm MT
Saturday, October 20, 2018 
  • Plenary 3: Partnering: The Oldest New Idea to Improve CF Care – 9:00 – 10:00 am MT (11:00 – 12:00 pm ET) 
  • Facebook Live: Howdy, Partner! A Live Q&A, 12:15 pm MT (2:15 pm ET)
  • CF Airway Inflammation – 10:30 am – 11:50 am MT
  • Progress in CF Pulmonary Disease – 10:30 am – 11:50 am MT
  • Pain Management in CF – 02:30 pm – 03:55 pm MT
  • ‘Adulting’ With CF – 02:30 pm – 03:55 pm MT
If you have any questions, please email communityvoice@cff.org.
Best,
The Community Voice Team

Check out Jerry Cahill’s latest Cystic Fibrosis Podcasts

Cystic Fibrosis Podcast 196: Managing CF as a Track Athlete

In Jerry Cahill’s latest video podcast, we meet Teena Mobley – a Long Island University graduate and former track athlete. Diagnosed at 9 years old, Teena’s life changed as she adjusted to her new medication schedule while staying dedicated to fitness and health. She shares how exercise helps her manger her illness, remain positive, and continue to believe in herself.
This video podcast was made possible through an unrestricted educational grant from the Allergan Foundation to the Boomer Esiason Foundation.

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Cystic Fibrosis Podcast 197: Moving from Middle School to High School

In Jerry Cahill’s latest cystic fibrosis video podcast, he spoke with Aidan Neville – a 13-year-old with CF who started 9th grade this year. He has two siblings, 22 cousins, and many more who make up his support system. While Aidan loves to stay active – surfing, playing football, and basketball – his exercise sometimes takes a backseat to his disease.
Because he is often on IVs and has had over 24 sinus surgeries, Aidan’s biggest concern about starting high school is missing class and that possibly negatively impacting his chances to go to the college of his choice.
Tune in to learn more about Aidan and his journey from middle school to high school.
This video podcast was made possible through an unrestricted educational grant from Gilead to the Boomer Esiason Foundation.

Take Our Survey. We’d love to hear from you!

Please consider taking our 5-10 minute survey so we can ensure that the CF Roundtable is the best it can be!
We value our readers’ feedback and would love to hear from you.

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.

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.

Airway Clearance Vests Fail to Show Measurable Short-term Lung Benefits in Study

A note from CF Roundtable: Please do not stop using your Vest or other HFCWO device because of this impractical study. There are important differences in this study that make it not applicable to CF and therefore, not meaningful for us. First, healthy volunteers without CF were enrolled. Too many adults with CF have experienced significant benefits with these HFCWO devices, not to mention the preventive benefits. To imply these devices worsen lung function when used by a healthy nonCF person vs one with CF – with the usual accompanying inflammation, mucus +/- bronchiectasis, etc – is not practical. Second, these healthy subjects tested all 4 HFCWO devices in one day. Even when I repeat spirometry in one day, my lung function numbers most often decline over time, even with rest periods in between. The researchers tested lung function with a rest period of 15 minutes on these healthy individuals after use of the HFCWO device then moved on to the next device. Very impractical and again – not applicable to use by individuals with CF.

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By Iqra Mumal

A clinical study into high-frequency chest wall oscillation vests — assessing their short-term impact on standard measures of lung function before and during use — challenges the view that these devices work through airflow bias in the lungs, the process responsible for mucus movement when breathing.

Findings, using established tests that include forced vital capacity (FVC), forced expiratory volume (FEV1), and forced expiratory flow (FEF25%-75%), suggest “that the concept of HFCWO vest-induced cephalad airflow bias is not supported by standard spirometry measurements,” researchers concluded. “None of the vest groups showed statistically significant increased airflow in the lungs.” Continue reading Airway Clearance Vests Fail to Show Measurable Short-term Lung Benefits in Study

Mutations in Genes Regulating Digestion Prevalent in CF Patients with Pancreatitis

By Vijaya Iyer

In addition to mutations in the CFTR gene, cystic fibrosis (CF) patients with pancreatitis also have a high prevalence of mutations in genes regulating pancreatic function, according to researchers.

Conducted by a research team in Italy, the study, “Trans-heterozygosity for mutations enhances the risk of recurrent/chronic pancreatitis in patients with Cystic Fibrosis,” was published in the journal Molecular Medicine Continue reading Mutations in Genes Regulating Digestion Prevalent in CF Patients with Pancreatitis

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.

 

Join in BreatheCon 2018!!

Calling all adults with CF!

Join me at #BreatheCon 2018! Step back from your day-to-day routine and connect with other adults with #cysticfibrosis to discuss topics that are unique to #lifewithCF. Created by and for people with CF, BreatheCon is a two-day virtual event with keynote panels, group chats, fun activities, and small-group video breakouts.
https://cff.swoogo.com/BreatheCon2018

CF Foundation | BreatheCon 2018

Registration is open for BreatheCon! Step away from your day-to-day routine and connect with other adults living with cystic fibrosis to discuss topics that are unique to life with CF. Created by and for people with CF, BreatheCon is a two-day virtual event with keynote panels, group chats, fun activities, and small-group video breakouts.Register today: https://on.cff.org/BreatheCon2018

Posted by Cystic Fibrosis Foundation on Tuesday, August 28, 2018