International Ventilator Users Network (IVUN)

02/07/2023

Join PHI on 2/21 at 1:00 pm Central for a lecture on noninvasive ventilation with Dr. Norma Braun. Register at https://tinyurl.com/phi-lec02.

07/21/2022

A case of polio has been identified outside New York City and confirmed by federal health officials, the New York State Health Department said on Thursday in what would be the nation's first known case of the disease in at least 30 years.

04/21/2022

Paul Alexander, who has been in an iron lung for 70 years, says he "never gave up."

02/27/2022

California families have long struggled to get home nursing care for medically fragile children. The problem has persisted with the arrival of COVID.

02/19/2021

IVUN is offering a unique opportunity to be showcased in our bimonthly newsletter, Ventilator-Assisted Living. We are interested in what your experience has been throughout the pandemic. Simply write a few paragraphs on how your life as a ventilator-user has been affected by the pandemic and send it to [email protected]. We will feature a selection of the submissions we receive in our next newsletter. Please submit by February 25th. Thank you!

12/03/2020

The Arc of California partnered with Stony Brook University School of Social Welfare to launch Project Connect, a FREE 24-hour support line for people with disabilities, their caregivers, family members and support team.

“Going into the pandemic, we were aware that people with disabilities would be experiencing greater levels of stress, fear and depression; and coupled with a well-documented provider shortage for mental health services, we felt the need to develop an open line of communication for our community as a safety net during this challenging time,” said Jordan Lindsey, Executive Director, The Arc of California.

“As the holidays rapidly approach and the Country is still in the midst of the COVID-19 pandemic, we hope that Project Connect will make mental health support more accessible for anyone who needs assistance.”

The Project Connect telehealth support line is staffed by graduate students in the Stony Brook School of Social Welfare and supervised by licensed social workers. The graduate students offer a wide range of support services including counseling, wellness checks, depression screening, and referrals to community services.

“We saw this collaborative opportunity with The Arc as serving a dual purpose. It is allowing us an opportunity to support the needs of people with disabilities and their families during a tough time, while also providing our graduate students with real world professional counseling experience,”said Warren K. Graham, Assistant Dean of Field Education and Clinical Assistant Professor, Stony Brook University School of Social Welfare. “Our team of social workers are well-prepared to offer support, guidance and referrals to anyone who calls.”

To get support for you or person with a disability, please call the toll-free line for Project Connect at 1-888-847-3209 or learn more at https://thearcca.org/project-connect/.

Take time for your mental health, it is IMPORTANT! As the holidays rapidly approach and the Country is still in the midst of the COVID-19 pandemic many

09/22/2020

PHI’s 14th annual awareness campaign will run October 11–17, 2020. Please share this post to spread the word- WE'RE STILL HERE!

We’re asking you to submit a photograph and a few descriptive paragraphs about a way you’ve found to stay connected with others during the pandemic. Further details in the attached photo.

Post-Polio Health International will select a grand prizewinner ($150 USD) and four runners-up (free PHI Membership for two years). The winning entries will be published in the fall issue of Post-Polio Health.

The runners-up will be announced October 12-15 with the announcement for grand prize to follow on October 16th.

Deadline for Submissions is 5:00 pm Friday, October 2nd.

To submit your entry:
Email your submission to [email protected] (Subject: WSH 2020 Contest) or mail it to our office at 50 Crestwood Executive Ctr, Suite 440, St. Louis, MO 63126. Include your name, mailing address, phone and/or email. Each person is limited to submitting one entry.

09/01/2020

September is AFM Awareness Month. Today, we highlight a story we shared last year about McKenzie Andersen, who developed AFM in 2014 during the first wave of cases.

https://www.ventnews.org/ventilator-assisted-living-33-1

07/27/2020

Read what ventilator-user Alice Wong and others have to say on the 30th anniversary of the ADA - https://nyti.ms/2ZJrK1S

Support the work of IVUN! Donate at https://post-polio.org/support-us/donate/

We asked the disability rights activists Judy Heumann, Alice Wong and Haben Girma to reflect on the 30th anniversary of the Americans With Disabilities Act. They said the work of a civil rights activist is never done.

06/23/2020

IVUN would like to hear from any home ventilator users who have experienced, or are currently experiencing, problems with obtaining supplies (particularly circuits) for their ventilator during the pandemic.

Please repond through Facebook or send an email directly to [email protected].

05/01/2020

Post-Polio Health International's mission is to collect, preserve and make available research and knowledge to promote the well-being and independence of polio survivors, home ventilator users, their caregivers and families, and to support the health professionals who treat them.

04/02/2020

Medicare and Coronavirus: What You Need to Know Posted on April 2, 2020 by Seema Verma, Administrator of the Centers for Medicare and Medicaid Services With the spread of coronavirus (COVID-19), being informed about your Medicare coverage is more important than ever. Medicare recently expanded its c...