Updates

July 19, 2019July 19, 2019
NIH $150,000 Grant to Support Research into Preserving Fertility in Women Prior to Lung Transplant

Sigrid Ladores, PhD, an associate professor at the University of Alabama at Birmingham School of Nursing, was awarded a $150,000 two-year grant by the National ... Read more
July 18, 2019July 16, 2019
How Much CF Do You Choose to Show?

Getting older has its perks. With each passing year, I find I’m a little more willing to reveal. I feel more open to showing ... Read more
July 18, 2019July 18, 2019
European Initiative Targets Diagnosis, Treatment of Rare Diseases

A new international consortium based in Paris, and funded largely by the 28-member European Union, intends to speed the diagnosis of rare diseases, while ... Read more
July 18, 2019July 18, 2019
Pancreas-on-a-chip Expected to Shed Light, Help Find New Treatments for CF-related Diabetes

Scientists have created a miniature human pancreas-on-a-chip that may help identify the cause of cystic fibrosis-related diabetes (CFRD), a common and life-threatening complication of ... Read more
July 17, 2019July 17, 2019
Pregnancy in CF Women With Poor Lung Function Not Linked to Pulmonary Decline, Study Shows

Poorer lung function in pregnant women with cystic fibrosis (CF) is associated with a lower birth weight for offspring, and a higher likelihood of ... Read more

Columns, Life in the Grey: a Column by Bailey Anne Vincent

An Open Apology to the Guy Who Married the Sick Girl
July 16, 2019July 13, 2019
This is an apology you don’t know I’m writing. The first thing I texted ...
Columns, Victorious - a Column by Brad Dell

We Don’t Get Used to Disease, So We Still Need Your Support
July 16, 2019July 11, 2019
Bradley was a dramatic kid. I’d sit up in bed at night, unable to ...
cystic fibrosis, News

NIH $2.3M Grant to Help Develop Nanoparticle Therapy for Muscle- and Weight-wasting Disorder
July 16, 2019July 16, 2019
Oleh Taratula, PhD, a researcher at Oregon State University‘s College of Pharmacy, has been awarded a ...
Columns, Mutations & Conversations - a Column by Tré LaRosa

Transforming Adversity into Progress
July 15, 2019July 11, 2019
In my senior year of high school, I went to the exercise section of ...
cystic fibrosis, News

Babies Treated with Synagis Show No Lasting Benefits in Lung Health as 7-Year-Olds, Real-world Study Finds
July 15, 2019July 15, 2019
Treating infants with cystic fibrosis (CF) with the antiviral therapy Synagis (palivizumab) does not improve long-term ...
cystic fibrosis, News

Different CFTR Potentiators Bind to Same Flexible Spot on Protein, Study Finds
July 12, 2019July 12, 2019
Approved and investigative cystic fibrosis (CF) treatments known as CFTR potentiators work by binding to the same ...

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What Does It Mean to Be a Patient?
July 11, 2019July 8, 2019
I have a funny relationship with the P-word. It feels as familiar as my ...
Eluforsen Improves CFTR Function in Cellular and Animal Models of CF, Study Says
July 11, 2019July 11, 2019
Eluforsen, an investigational therapy for the treatment of cystic fibrosis (CF), improves the function ...
AzurRx BioPharma Launches Phase 2 Trial Testing MS1819-SD Combined With PERT for EPI
July 10, 2019July 10, 2019
Medicine Is Splitting Me into Pieces
July 9, 2019July 3, 2019
Why Rare Disease Communities Must Stand United
July 9, 2019July 9, 2019
Modified and More Rigorous Cleansing Procedure May Better Prepare CF Patients for Colonoscopy, Study Says
July 9, 2019July 9, 2019

Is it Ethical to Have Another Child Once You’ve Had One with CF?
July 8, 2019July 3, 2019
Since I work in a cystic fibrosis (CF) lab and prioritize being open about ...
IMPACT-breath Study Explores Non-invasive Diagnosis of Pseudomonas Aeruginosa Lung Infections in CF Patients
July 8, 2019July 8, 2019
World’s First Alport Stamp Is Macedonian Mom’s Latest Win for Rare Disease Patients
July 4, 2019July 4, 2019
Adding CF-specific Variables More Accurately Prioritizes Patients on Lung Transplant Waitlist, Study Says
July 3, 2019July 3, 2019

I Need Help Asking for Help
July 2, 2019June 28, 2019
Asking for help. It sounds so easy, doesn’t it? In the dance world, however, ...
BillionToOne Announces Launch of UNITY Prenatal Screen
July 2, 2019July 2, 2019
Finding My CF Community Has Restored My Sense of Belonging
July 1, 2019June 27, 2019

News

FDA Grants Orphan Drug Status to AR-501, Potential CF Treatment for Chronic Lung Infections
July 1, 2019July 1, 2019
AR-501, an investigational inhaled formulation of gallium citrate to treat chronic lung infections in ...
News

Children’s Book ‘Our Baby has Sixty-Five Roses’ Launched by CF Parent
June 28, 2019June 28, 2019
Children often mistakenly pronounce cystic fibrosis (CF) as “65 roses.” Eilís Moroney and Ruth ...
Columns, Work that Works - a Column by Elly Aylwin-Foster

From Boom to Bust: Managing Work with CF
June 27, 2019June 25, 2019
Three weeks ago, I gave a guest lecture to the MBA class at the ...
cystic fibrosis, News

Ultrasound Can Help Detect Liver Disease in Kids with CF, Study Says
June 27, 2019June 27, 2019
Ultrasound imaging can be a reliable diagnostic tool for early detection of liver disease ...
Columns, This Lung Life - a Column by Ella Balasa

Soul Sisters: My Reflections on Mallory Smith’s Memoir
June 26, 2019June 25, 2019
A truth binds the lives of two women who have never met. One sees ...
News

Better Access to Relizorb for Patients on Feeding Tubes Advocated by Doctors and Dietitians
June 26, 2019June 26, 2019
More than 60 cystic fibrosis experts strongly support Relizorb being made available to CF patients ...
News

NORD Honors Industry, Patient Advocates at Rare Impact Awards Gala
June 26, 2019June 25, 2019
A violinist with vasculitis, two Texas politicians and a pharmaceutical company whose marijuana-derived therapy ...
Columns, Life in the Grey: a Column by Bailey Anne Vincent

Diet Tips from a ‘Dying’ Girl
June 25, 2019June 20, 2019
This is going to feel like something you’ve read before. It’s going to say ...
Columns, Victorious - a Column by Brad Dell

Are Anger and Fear Villains, or Must We Acknowledge Them to Thrive?
June 25, 2019June 21, 2019
It’s been almost three years since a port-a-cath infection nearly killed me. A fungal ...
News

FDA Approves Symdeko for Treatment of CF Children, Ages 6 to 11, with Certain CFTR Mutations
June 25, 2019June 25, 2019
The U.S. Food and Drug Administration (FDA) has approved Symdeko (tezacaftor/ivacaftor and ivacaftor) tablets ...
Columns, Mutations & Conversations - a Column by Tré LaRosa

My Recent Health Revelation Got Me Thinking About Infertility and CF
June 24, 2019June 21, 2019
Most clinical manifestations of cystic fibrosis (CF) are in the lungs, pancreas, gastrointestinal tract, ...
News

Long Use of Inhaled Antibiotics to Treat P. aeruginosa in Children May Raise Risk of Fungal Infection
June 24, 2019June 24, 2019
Long-term use of inhaled antibiotics, given to treat lung infections caused by the bacteria ...
31 days of CF, News

31 Days of CF: Hannah’s Story
June 21, 2019June 6, 2019
View this post on Instagram Day 8 of 31 Days of CF⁣⁣⁣⁣ Topic: Sterilization ...
31 days of CF, News

31 Days of CF: Chad’s Story
June 21, 2019June 6, 2019
View this post on Instagram Day 30 of 31 Days of CF⁣⁣⠀ Topic: Being ...
Becoming Visible by Elizabeth Rogers, Columns

My Temporary Foray into the Visible Realm of an Invisible Illness
June 21, 2019June 19, 2019
Cystic fibrosis is, for the most part, considered an invisible illness. Shortness of breath ...
cystic fibrosis, News

Orkambi Improves Exercise Tolerance in Adults With Severe CF, Study Shows
June 21, 2019June 21, 2019
Treatment with Orkambi significantly improves exercise tolerance in adult cystic fibrosis patients with severe ...
31 days of CF

31 Days of CF: Gemma’s Story
June 20, 2019June 6, 2019
View this post on Instagram Day 9 of 31 Days of CF⁣⁣ ...
Columns, Work that Works - a Column by Elly Aylwin-Foster

Avoiding the Pitfalls of Information Overload
June 20, 2019June 18, 2019
This time last week, aided by copious amounts of coffee, I was putting the ...

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