Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a guidebook recently released by The National Alliance for Caregiving and Global Genes. 

This resource is written for caregivers from caregivers, with the hope of helping others know they aren’t alone. This comprehensive guidebook is free for caregivers and is called “The Circle of Care Guidebook for Caregivers of Children with Rare and/or Serious Illnesses”. 


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‘Not Alone in the Dark’: New Guide for, by Caregivers of Children With Rare Diseases

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a piece from co-columnist Kevin Olson, highlighting his experience with his wife contributing to an awareness campaign called “30 Days of PF”. 

Kevin’s wife Dana recounted her experience as a caregiver through an IPF diagnosis and lung transplant, which naturally, was different than that of a patient. Kevin shared that discussing this experience with his wife and understanding her perspective of his IPF journey brought them closer together. 

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My Wife Shares Her PF Story

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing the first Interstitial Lung Disease (ILD) Day coming up September 15th. The event will be focused on raising awareness about ILDs, of which PF is one, and subsequently hoping patients are able to be diagnosed faster. This first-ever event is a collaboration between various patient and advocate-driven organizations connected to the ILD community, including PF Warriors and the Wescoe Foundation for Pulmonary Fibrosis.

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Patient Groups Team Up to Create First ILD Day on Sept. 15

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote on the importance of choosing friends who are supportive, despite your struggles as a PF patient. Like all chronic illnesses, dealing with IPF is difficult and there is a lot to manage physically, socially and emotionally. These struggles are made easier with friends who support the habits and routines that reduce IPF symptoms and encourage healthy living, caring not only for a patient’s physical health but mental health as well.

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Choosing Friends Who Support Healthy Habits as an IPF Patient

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing an interview with Marcella Debidda, President of BioNews Clinical. This is a new division of BioNews Services focusing on connecting patients with rare and chronic diseases to clinical trials with a focus on amplifying their voice in the process of participating in clinical trials and designing future studies. 

BioNews Clinical launched on September 7th and is focusing on a pilot study for those with IPF. More information can be found on https://bionews.com/clinical-trial-services/

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BioNews Clinical Will Bring Trials Into ‘Continuum’ of PF Care

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a piece from co-columnist Emma on her Mom’s recent morale boost, which was a visit from her grandchildren just over 1 year post lung transplant. 

As Emma describes, her Mom wasn’t certain she’d even get to meet her third grandchild after being diagnosed with IPF and requiring a lung transplant. Then amid COVID and isolation to protect her new lung, Emma’s Mom Diana had to remain vigilant with social distancing. Recently, she had a visit with her grandchildren, which Emma describes as a healing power of joyful distraction! 

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The Healing Powers of Joyful Distraction

#InstagramLive​ here: https://www.instagram.com/p/CT5s3TIg5M7/

Ally Macgregor chats with some amazing people on an Instagram Live for an exclusive behind-the-scenes look at the 30 Days of PF campaign! Ally shares the stage with Kevin Olson and they were joined by special guests Dana Olson and Latoya Hawkins to talk about what the 30 Days of PF campaign means to the PF community, as well as the importance of narrative storytelling as part of rare disease advocacy. 

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Behind-the-Scenes of #30DaysofPF

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing the intentions of a new institute, which aims to leave no rare disease patient behind. 

The Institute for Life Changing Medicines is paving the way for pharmaceutical companies and others to make drug development and distribution more accessible for rare disease patients – many of whom have the largest therapeutic need, but are often left behind when it comes to therapies for their rare disease. 

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New Institute Aims to Leave No Rare Disease Patient Behind

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads a column she wrote summarizing the difficulties she experiences each September. 

With cottage season ending, cold and flu season beginning and feeling like Pulmonary Fibrosis Awareness month isn’t helping enough patients with this cruel lung disease; Charlene often feels a bit mixed up each September. She’s curious to hear from others as to which parts of the year are the most difficult for you as fellow IPF patients. Please share your thoughts with us! 

Are you interested in learning more about Pulmonary Fibrosis? If so, please visit: https://pulmonaryfibrosisnews.com

Why September Is Hard for Me as an IPF Patient

Pulmonary Fibrosis News Columnist and Forum Moderator Charlene Marshall reads an article summarizing a review study that looked at the use of adding antibiotics to standard IPF care. In this case, the use of two antibiotics were examined to see if they slowed lung function decline or prolonged survival in people with IPF. Unfortunately, neither antibiotic proved to be effective and caused adverse effects such as gastrointestinal issues among patients taking them. Further studies would allow this to be investigated further, however, for now the research team advises against adding antibiotics to standardized IPF care. 

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Review Study Does Not Recommend Adding Antibiotics to Standard IPF Care

Pulmonary Fibrosis News is committed to creating a 24-hour news cycle of the latest science and research news related to addressing PF. While there is a great deal of research going on right now for treating and eventually curing PF, that news is rarely reported. Our team of writers and editors are proven professionals in the science and research fields who are committed to sourcing and presenting new research news in a format that patients can easily understand.

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