ARDS Foundation

https://news.vumc.org/2023/05/04/vumc-to-coordinate-national-effort-to-reduce-ards-pneumonia-sepsis/

VUMC to coordinate national effort to reduce ARDS, pneumonia, sepsis Vanderbilt University Medical Center has received a $31.6 million federal grant to lead a national effort to better understand acute respiratory distress syndrome, pneumonia and sepsis.

https://soundcloud.com/user-152741454/pauline-jordan-march-29-2023?si=abe55ebf386d4db1b1e43a1c247d211c&utm_source=clipboard&utm_medium=text&utm_campaign=social_sharing

Andrew's mom, Pauline Jordan, talking about the fundraiser to raise funds for ARDS Foundation in honor of her son's memory.

Pauline Jordan - March 29, 2023 Pauline discussed a memorial Softball tournament and ARDS that claimed the life of her son Andrew Tod Thompson. More on the tourney at the link: https://www.facebook.com/groups/640669288061159

https://www.youtube.com/watch?v=V6Cg43s0V_8

Andrew Tod Thompson Memorial Softball Tournament Andrew Tod Thompson, 23, is remembered as a vibrant young man who never met a stranger. Thompson was diagnosed with the flu on Nov. 23 that progressed to Acu...

https://www.news-medical.net/news/20230327/Combination-of-hydrocortisone-and-fludrocortisone-benefits-patients-with-septic-shock.aspx

Combination of hydrocortisone and fludrocortisone benefits patients with septic shock Sepsis occurs in approximately 1.7 million hospitalizations in the U.S. with in more than a third of hospitalizations resulting in death.

Hi all. ARDS Foundation is helping to recruit former Acute Lung Failure survivors and family members of those patients for APPLE, a study that stands for Approaches to Performance of PICU Liberation Elements.

The study is looking for stakeholders who are survivors of acute lung injury, who are currently 40 years or under who were hospitalized when they were minors (or their caregiver of such a patient--the caregivers can be any age) and on the vent for 2 days or more.

The study hopes to be a five year study and plans to meet via webinar meetings two days a year. There will be some kind of incentive offered for those who participate, but I am not sure what that will entail.

If this is something that you would be interested it participating in, please email me at [email protected].

Thank you for your consideration. Eileen

Hi all. ARDS Foundation is helping to recruit former Acute Lung Failure survivors and family members of those patients for APPLE, a study that stands for Approaches to Performance of PICU Liberation Elements.

The study is looking for stakeholders who are survivors who are 30 years or under who were in the hospital when they were minors (or their caregiver) and on the vent for 2 days or more.

The study hopes to be a five year study and plans to meet via webinar meetings two days a year. There will be some kind of incentive offered for those who participate, but I am not sure what that will entail.

If this is something that you would be interested it participating in, please email me at [email protected].

Thank you for your consideration. Eileen

New study for patients at risk of getting ARDS shows a benefit to patients. Read on...

Oral Sabizabulin for High-Risk, Hospitalized Adults with Covid-19: Interim Analysis

Oral Sabizabulin for High-Risk, Hospitalized Adults with Covid-19: Interim Analysis | NEJM Evidence Oral Sabizabulin for High-Risk Adults with Covid-19Barnette et al. report on an interim analysis of a phase 3 randomized controlled trial of the orally available novel microtubule disruptor sabizab...

https://www.accesswire.com/viewarticle.aspx?id=717425

Aqualung Therapeutics Corp. Announces FDA Clearance of Investigational New Drug (IND) Application for ALT-100, a Novel mAb Therapy for the Treatment of Acute Respiratory Distress Syndrome (ARDS) - Aqualung will continue the P1A Healthy Human Volunteer Trial and complete the trial first half of 2023 - The Phase 2A study (PUERTA) will be initiated in the 2nd half of 2023 - ALT-100 is the first humanized mAb therapy that targets the eNAMPT protein which plays a pivotal role in regulating infla...

I previously posted this for a study for UPenn. They are still seeking more people, especially family members or caregivers or patient advocates, but also survivors of acute respiratory failure that required ICU care and at least 48 hours of mechanical ventilation. All are invited to participate. However, if you already emailed me at [email protected] you do not need to email me again because I already provided that information to the doctors.

Please include your name, email address, the year you or your loved one had ARDS, how long you were on the vent, and your age now.

For your recollection, below is the original information provided about the study. Hopefully we can get a broad based group of people, all different types of stakeholders, who are willing to participate in the study.

ARDS Patient Recruitment for UPenn Study:

Principal Investigator, Katie Auriemma, is seeking to recruit 10-12 adults who are survivors, family caregivers, or patient advocates that previously experienced acute respiratory failure and required ICU level care, as well as at least 48 hours of mechanical ventilation.

Those who qualify would be compensated for their time (up to $300) for a few hours of their time responding to questionnaires.
If you are interested in participated in this study, please contact me at Eileen at [email protected] and I will forward your information to those conducting the study.

Please include your name, email address, the year you or your loved one had ARDS, how long you were on the vent, and your age now.

Thank you again for your time and dedication into lung research. Eileen

Looking to talk to someone who depends on external oxygen supplementation daily and is willing to share their experiences and information. Please email Eileen at [email protected]

Thank you so much. Eileen

Aqualung Therapeutics, an early stage immunotherapeutics biotech company developing an anti-inflammatory therapeutic platform for serious unchecked inflammatory disorders, announced today that their first two patients have been enrolled in the phase 1A healthy human volunteer Study.
read on... https://finance.yahoo.com/news/first-human-subjects-enrolled-aqualung-011000850.html

https://www.healio.com/news/pulmonology/20220822/icu-team-support-training-facilitated-implementation-of-prone-positioning-for-covid19-ards

ICU team support, training facilitated implementation of prone positioning for COVID-19 ARDS Hospital support and leadership from bedside clinicians were the primary facilitators for successful implementation of prone positioning for COVID-19 acute respiratory distress syndrome, researchers reported. Chad H. Hochberg, MD, MHS, pulmonologist at Johns Hopkins University, and colleagues conduc...

ARDS Patient Recruitment for UPenn Study:

Principal Investigator, Katie Auriemma, is seeking to recruit 10-12 adults who are survivors, family caregivers, or patient advocates that previously experienced acute respiratory failure and required ICU level care, as well as at least 48 hours of mechanical ventilation.

Those who qualify would be compensated for their time (up to $300) for a few hours of their time responding to questionnaires.

If you are interested in participated in this study, please contact me at Eileen at [email protected] and I will forward your information to those conducting the study.

Please include your name, email address, the year you or your loved one had ARDS, how long you were on the vent, and your age now.

Thank you again for your time and dedication into lung research. Eileen

Phase 3 drug study on ARDS drug:

Edesa Biotech Adds Mechanically Ventilated Patients to Phase 3 ARDS Study | BioSpace Edesa Biotech, Inc. (Nasdaq:EDSA), a clinical-stage biopharmaceutical company focused on inflammatory and immune-related diseases, today announced that the company has initiated enrollment for a second cohort of patients for the Phase 3 part of a Phase 2/3 study of the company's critical care drug c...

Mayo Clinic researchers are seeking individuals and/or family members of individuals who have survived the intensive care unit (ICU) and identify as le***an, gay, bisexual, transgender, and/or q***r (LGBTQ) to participate in an interview research study.

If you or a loved one identifies as LGBTQ, has been placed on a ventilator in the ICU in the past 6 years, and are willing to share your story you would be eligible to participate. Participation in the study involves one, 30-60 minute interview and participants will be compensated for their time.

If you have questions about the study or are interested in participating, please contact study staff at (507) 293-9440 or https://mayocl.in/3ET1o0D.

Assessing the Experiences of LGBTQ Patients in the ICU Learn more about services at Mayo Clinic.

Do you have a question for an ARDS specialist? Or want to look through questions that have been asked previously? Check out Ask the Doctor: https://ardsglobal.org/category/ask-the-doctor/

Ask The Doctor Archives - ARDS Global ASK THE DOCTOR A QUESTION ARDS Foundation invites those in the ARDS Community to ask general questions related to acute respiratory distress syndrome (ARDS), the complications that surround ARDS, as well as issues that occur as a result of Post Intensive Care Syndrome (PICS). Each month a specialist...

College Scholarships Available:
The a Scholarship Fund was established in 2020 to help adults with rare diseases to pursue their dreams through education.

Thanks to the support of Horizon Therapeutics, The EveryLife Foundation is pleased to announce its third year of the Scholarship Fund, a scholarship dedicated to the rare disease community. The Scholarship Fund will award up to 53 $5,000 scholarships for the Fall 2022 semester. This scholarship application is open tomorrow, March 18 through April 22, 2022 at rarescholarship.org

The Scholarship is available to applicants who are:
Over the age of 17
Residents of the United States
Diagnosed by a physician as having any form of rare disease regardless of treatment status

Must be planning to enroll full-time or part-time in undergraduate or graduate study at an accredited two- or four-year college, university, or vocational-technical/trade school for the Fall 2022 semester. There is no minimum amount of credit hours to be part-time
https://everylifefoundation.org/rare-scholarship/

Scholarship for Rare Diseases - EveryLife Foundation for Rare Diseases The Scholarship Fund – was created to enrich the lives of adults living with rare diseases by providing support for their educational pursuits

A great resource for families with loved ones in the ICU. Check it out!

https://anchor.fm/walkingyouthroughtheicu

Walking You Through The ICU • A podcast on Anchor What really happens to patients during medically-induced comas when patients are intubated on ventilators? How can loved ones of patients in the Intensive Care Unit help patients survive and thrive? What can families do to advocate for their loved ones to have the best and evidence-based care in the...

Mayo Clinic researchers are seeking individuals and/or family members of individuals who have survived the intensive care unit (ICU) and identify as le***an, gay, bisexual, transgender, and/or q***r (LGBTQ) to participate in an interview research study. If you or a loved one identifies as LGBTQ, has been placed on a ventilator in the ICU in the past 6 years, and are willing to share your story you would be eligible to participate.

Participation in the study involves one, 30-60 minute interview and participants will be compensated for their time. If you have questions about the study or are interested in participating, please contact study staff at (507) 293-9440 or email [email protected].

Attention Lung Patient Survivors or Family Members (caregiver) of a lung patient: we are looking for a few people who would be willing to participate on an American Thoracic Society Workshop.
ARDS Foundation is helping Dr. Jacky Kruser and Dr. Chris Cox to find a few people who have experience, either as a lung patient or a caregiver to a lung patient where decision making had to be utilized with respect to the use of a ventilator and where end of life issues were examined.
Lung patients or caregivers of lung patients includes ARDS, COPD, pulmonary fibrosis, Alpha 1, LAM, or any of the nemerous lung conditions that exist.
If you are interested in being considered for participation on this workshop or would like more information about the requirements for participation, please MESSAGE ME ON THIS PAGE - DO NOT email me at [email protected] AS MY EMAIL IS NOT WORKING RIGHT NOW and we can discuss it in further detail and I can provide you with more information regarding requirements necessary.

This is a unique opportunity to be part of a medical research committee and to offer your unique perspective as a patient or caregiver, participating alongside medical professionals.
If you have a medical background that is a plus but you do not need to have one to be considered.

I look forward to hearing from anyone who is interested in sharing their perspective and embracing this opportunity.
Thank you, Eileen Rubin

Attention Lung Patient Survivors or Family Members (caregiver) of a lung patient: we are looking for a few people who would be willing to participate on an American Thoracic Society Workshop.

ARDS Foundation is helping Dr. Jacky Kruser and Dr. Chris Cox to find a few people who have experience, either as a lung patient or a caregiver to a lung patient where decision making had to be utilized with respect to the use of a ventilator and where end of life issues were examined.

Lung patients or caregivers of lung patients includes ARDS, COPD, pulmonary fibrosis, Alpha 1, LAM, or any of the nemerous lung conditions that exist.

If you are interested in being considered for participation on this workshop or would like more information about the requirements for participation, please email me at [email protected] and we can discuss it in further detail and I can provide you with more information regarding requirements necessary.

This is a unique opportunity to be part of a medical research committee and to offer your unique perspective as a patient or caregiver, participating alongside medical professionals.

If you have a medical background that is a plus but you do not need to have one to be considered.

I look forward to hearing from anyone who is interested in sharing their perspective and embracing this opportunity.

Thank you, Eileen Rubin

Some questions for ARDS survivors regarding oxygen. This is for annecdotal information to be included in a medical article beging written currently.

1. Did you receive supplemental oxygen after coming off of the ventilator, while still in the hospital?

2. Did you receive supplemental oxygen after being discharged to home that you had not required before your admission?

3. Can you comment on what it was like to be on supplemental oxygen?

4. Were there any specific challenges to that aspect of your illness and recovery?

5. Do you think shortening the amount of time patients require supplemental oxygen is an important target for studies of new interventions in ARDS and other respiratory illnesses?

You can post your thoughts or email me at [email protected] or fill out the survey at https://ardsglobal.org/supplemental-oxygen-survey/

Thank you so much for your input. Eileen

Prone Position In Severe Acute Respiratory Distress Syndrome (this article has good descriptions of prone position in ARDS)

https://newsconcerns.com/prone-position-in-severe-acute-respiratory-distress-syndrome/

Prone Position in Severe Acute Respiratory Distress Syndrome - News Concerns This article was previously published May 7, 2020, and has been updated with new information. Lying in the prone (face down) position, in which your chest is down and your back is up, could be a simple way to improve outcomes in cases of severe respiratory distress. This topic has received renewed a...

If you have a loved one who is in the ICU with ARDS, you might want to consider creating an ICU Diary for them. For more information about this, check out our new page on the website: https://ardsglobal.org/icu-diary/

ICU Diary .post-content a { text-decoration: underline;} Intensive Care Unit (ICU) Diary The ICU 'intensive care unit' Diary is a diary that is written for intensive care patients during their time of sedation and mechanical ventilation. An ICU diary can be written by relatives and visitors. (In some instance...

We would really love to know how supplemental oxygen affected you when dealing with the post ARDS issues related to your hospitalization.

Please fill out the survey or if you would like, please contact me at [email protected]

We would love to hear your perspective! Eileen

Participate in the Supplemental Oxygen Survey! https://ardsglobal.org/supplemental-oxygen-survey/

Supplemental Oxygen Survey Fill out my online form. var w1s61goc1g8zi9q; (function(d, t) { var s = d.createElement(t), options = { 'userName':'ardsregistry', 'formHash':'w1s61goc1g8zi9q', 'autoResize':true, 'height':'1091', 'async':true, 'host':'wufoo.com', 'header':'show', 'ssl':true }; s.src = ('https:' == d.location.protoc...