CYSTIC FIBROSIS RESEARCH INSTITUTE

RISING UP FOR A DREAM - BY NICHOLAS KELLY, RD

Nicholas Kelly, dietitian, motivational speaker, author, DJ, artist, poet, dancer, advocate, and CF Warrior, shares the secrets to his freestyling "sauce.”

Enjoy his inspirational freestyle artistry entitled “Rise Up For A Dream,” and learn how you can empower and express your unique voice.

WATCH FULL CF COMMUNITY VOICES PODCAST:

Find more from Nicholas Kelly @NicholasKellyRD on Twitter, Facebook, Instagram and Youtube.

ANTI-MYCOBACTERIUM AVIUM COMPLEX ANTIBODIES NOT SUFFICIENT TO DIAGNOSE NTM PULMONARY DISEASE

Researchers in Japan have assessed the efficacy of using a combination of anti-Mycobacterium avium complex (MAC) antibody testing and clinical findings to identify nontuberculous mycobacterial pulmonary disease (NTM-PD).

INHALED ANTIBIOTIC FOR PSEUDOMONAS IN CF SHOWS SAFETY IN EARLY TRIAL

A novel inhaled antibiotic called iMPV, developed by biotech company Spexis to treat Pseudomonas aeruginosa infections, showed a promising safety profile in a first trial conducted in healthy volunteers.

ZOOM INTO NOW! JANUARY 24, AT 5PM PT (8PM ET)

Zoom Into Now with Dr. Julie Desch combines mindfulness practices with meditation, which has been shown to reduce anxiety and depression. Open to those with CF and family members, 16 years and up.

REGISTER: https://cfri.tiny.us/CFRI-ZoomIntoNow

FAT-FREE MASS LINKED TO LIVER FUNCTION IN TEENS WITH CF

A study in the U.K. shows that fat-free mass - the lean mass in muscles, organs, bones, ligaments and tendons - in adolescents with CF was significantly lower in those with CF-related liver disease.

Results also show that physical activity increases fat-free mass. Fat-free mass was assessed using bioelectrical impedance analysis.

P. AERUGINOSA DEVELOP RESISTANCE TO TOBRAMYCIN THROUGH CLUMPING

Researchers in Canada and the U.S. have shown that Pseudomonas aeruginosa can become resistant to the antibiotic tobramycin by clumping into larger aggregates and producing more of a protective sugar molecule called Psl.

The team analyzed sputum samples from a small group of children with CF who received inhaled tobramycin to treat a new P. aeruginosa infection.

CYSTIC FIBROSIS VESTS WORLDWIDE – CHANGING LIVES, ONE VEST AT A TIME

CF Vests Worldwide is a non-profit organization that provides therapy vests, portable oxygen concentrators, and nebulizers to CF patients all over the world.

Their mission is accomplished through donations - either monetary or by way of donated medical equipment. To date, the organization has distributed 154 vests to people with CF in 40 countries.

CYSTIC FIBROSIS STUDY SEEKING PARTICIPANTS

A research firm is seeking parents/caregivers of children with CF aged 2 to 5 years who may be interested in providing feedback along with their children on a questionnaire designed to collect information on their experiences and health perceptions managing CF.

Participants will complete the questionnaires and answer a series of questions via an interview session conducted remotely over video conference. Participants who complete the interview will receive payment for their time.

SHARE YOUR RANDOM ACTS OF KINDNESS

Kick off 2023 with positive vibes! CFRI is looking for participants to record 2-3 minute videos sharing personal random act of kindness stories (big or small). These short stories will then be combined to create one inspirational podcast.

Researchers analyzed insulin and blood glucose data from more than 400 children and adults with CF from four CF centers. \

While one year of treatment with Trikafta improved insulin secretion and body weight in people with CF, there were no consistent treatment-related improvements in measures relating to CF-related diabetes.

The group meets next on Wednesday, December 14, at 5pm PT (8pm ET), and is open to Spanish-speaking adults with CF as well as family members of adults and children with CF.⁠ ⁠ Facilitated in Spanish by Marilyn Calderon, LICSW, and open to participants across the nation and globe.⁠ Get together with others who understand the challenges caused by CF.⁠

Supporting CFRI could never be easier: a percentage of every purchase you make on AmazonSmile goes to CFRI with no effort or cost to you! ⁠ ⁠ Go to https://SMILE.amazon.com (don't forget the SMILE) and select CFRI as your charity of choice.⁠ ⁠ Your support helps us to continue providing invaluable research funding, educational resources, and wellness support programs to the global Cystic Fibrosis community.⁠ ⁠ ⁠ [ID: AmazonSmile logo and tag line, "Help us every time you shop Amazon.]

RSV CASES ON THE RISE

Previously known as an infection of young children, RSV (Respiratory Syncytial Virus) cases are on the rise and impacting adults, particularly adults with chronic lung disease.