A Message from PFF about JOHN MASSAUA
Please donate; help the PFF get one step closer to a cure!
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Dear Friends and Family of John Massaua:
John has asked me to prepare and show this message to you on his behalf. I am Amy Wardzala from the Pulmonary Fibrosis Foundation (PFF), and I am honored to be John’s proxy for this message.
John was diagnosed with pulmonary fibrosis (PF) in September of 2017; since then while under the attention of PFF’s Care Centers in Boston, he has been a true PF Warrior fighting for himself and through his PFF involvement, others stricken by this disease for which there is no cure as of yet. Thank you for the support you have provided the PFF through John’s or one of his family’s requests in past years as you’ve come together with the PF community toward finding a cure. (Even if you are new to a request, please read on.)
John’s lead CNA Caretaker says this about John, “If people only knew how hard John works to stay on this earth, they would be exhausted; I’ve never met anyone with more resilience.” At the PFF, we are more than pleased that despite John’s now living with Stage 5 PF as defined by the American Thoracic Society, he uses his positive attitude to support the PFF!
As a PFF Legislative Advocate among several, John engaged significantly in lobbying a myriad of Congressional Offices to direct the Department of Defense to close out most PF-causing burn pits and to have plans to close out the few remaining asap, doing so by Congress passing the PACT Act in August of 2022, which provided substantive health care and benefit expansion for our Nation’s vets.
Similarly, John has been advocating congressional offices from several States to move the bipartisan Supplemental Oxygen Access Reform (SOAR) Act, into law, having its being recently introduced in both the U.S. House (H.R.7829) and U.S. Senate (S.3821). Using his own story on the difficulty of accessing oxygen, John has engaged in the oxygen reform effort for well over two years, not only advocating on behalf of the PFF, but also on behalf of the American Lung Association and the Boston-based ILD Collaborative. The passage of SOAR would mark a significant step forward in PFF’s mission to improve access to supplemental oxygen for Medicare beneficiaries and expectantly eventually for private insurance clientele.
Of course, as part of PFF’s annual advocacy, John bangs the drum for Congress to direct The National Heart, Lung, and Blood Institute (NHLBI)/National Institutes of Health (NIH) and the Peer Reviewed Medical Research Program (PRMRP)/Department of Defense (DOD) to provide funds that are crucial to advancing pulmonary fibrosis research. John’s participation in being a PFF Advocate is key to amplifying the voice of the pulmonary fibrosis community in both policy and funding decisions!
John is an active and engaged member of the PFF Community Registry, which is fostering a community of PF/ILD (Interstitial Lung Disease) patients, PF/ILD lung transplant recipients, caregivers, and biological family members of PF/ILD patients including those who have passed away. The Registry's goal is to advance medical research to improve the lives of patients with pulmonary fibrosis. By the Registry providing ongoing data, the more answers researchers can find on the best way to care for PF/ILD patients and support their caregivers and family members, ultimately helping to provide better nurture for patients, including managing symptoms, enhancing quality of life, and progressing toward a cure for PF/ILD.
John for the past 18 months has been participating in a clinical trial for treatment of PF. Clinical trials are research studies that explore whether a medical strategy, treatment, or device is safe and effective for humans. PFF’s Clinical Trial Finder maintains a comprehensive list of clinical trials for pulmonary fibrosis related conditions through which John found the phase III, double-blind, randomized, placebo-controlled trial of Boehringer Ingelheim (BI) 1015550 for patients with progressive pulmonary fibrosis: FIBRONEER-ILD. Summarily, the worldwide trial is seeking to quantify anti-inflammatory and antifibrotic effects in in vitro and in vivo patterns of lung fibrosis and demonstrate potential synergistic effects when used with the antifibrotic pharmaceutical nintedanib on fibroblast proliferation, i.e. in layman’s terms, slow PF lung scaring.
The mission of the PFF is to accelerate the development of new treatments and ultimately a cure for pulmonary fibrosis. Until this goal is achieved, the PFF is committed to advancing improved care of patients with PF and providing unequaled support and education resources for patients, caregivers, family members, researchers, and health care providers. A committed board of directors helps guide the activities that support PFF’s vital mission, bolstered by a number if subcommittees: Finance, Development, Programs, Medical Advisory, and Research Review. John is an engaged member of the PFF Finance Committee, lending his broad experience as a V-level executive, business counselor, and PQ university professor to helping oversee PFF’s financial matters including budgets, financial diligence, reporting, auditing, investment strategies, etc.
Although not formally enrolled as a PFF Ambassador, John serves ardently as spokesperson for the PF community. Whether it be on social media, within community forums, in the press, enlightening caregivers, or assisting his pulmonologist in teaching about PF to 2nd year Harvard medical students, sharing PFF’s message of hope and inspiration is always at top of mind for John.
In September 2021, John took to the backyard for the PFF’s National Virtual Walk Day, raising a bountiful of dollars for the PFF. Then in September 2022, John teamed up with PFF Aficionado Laurie Chandler, who this year 2024 is observing her seventeenth-year battling PF. Fortunately for Laurie, contributing to her successful longevity is a bilateral lung transplant completed in 2014, ceding Laurie this year to be celebrating a joyous ten-year transplant anniversary! Teamed up, Laurie and John crafted together for PFF’s National Virtual Walk Day 2022, “Team New England Gills for PFF”, and had friends and family join them for an actual Walk in Newcastle, NH. The result was the largest amount of funds ever raised by any Walk-Team nationwide.
In September 2023, working with PFF staff, Laurie and John took to heart, promoting September as Pulmonary Fibrosis Awareness Month, and despite John’s diminishing energy, the New England Gills for PFF hosted its own event, “The New England Community Walk”, complete with a live band, antique fire engine rides, kids, and adult games, of course the walk, a silent auction, tasty snacks, and more. (Click Gratitude Times to see a copy of the report-out on the event). The 2023 event, thanks to you, turned out to be one of the largest, if not the largest, custom fundraising event in the almost 25-year history of the PFF.
So now it’s September 2024 and the theme for PFF to help create PF awareness, is “Every Breath – Every Story”. That’s why John, given his current frailty, asked that I share his story in this messagel with you, especially as it relates to PF and the PFF. So, in his words, “Please make a donation to the PFF by supporting my JRM once again ask by clicking to the right on Donte Now; thank you and God bless you.”
The Pulmonary Fibrosis Foundation rates among top charities in the U.S. The PFF has a four-star rating from Charity Navigator and is an accredited charity by the Better Business Bureau (BBB) Wise Giving Alliance. PFF has met all of the many requirements of the National Health Council Standards of Excellence Certification Program® and has earned the Guidestar Gold Seal of Transparency. Registered 501(c)(3) - EIN: 84-1558631.
Concluding with this recent comment to John by PFF’s President/CEO Scott Staszak, “Thanks for everything you, John, are doing to support the PFF! Your perseverance despite your current prognosis is highly inspiring.”
Please donate ,,,
Sincerely and gratefully on behalf of John,
Amy
Amy Wardzala | Vice President, Development
Pulmonary Fibrosis Foundation
230 East Ohio Street | Suite 500 | Chicago | IL | 60611-3270
844.TalkPFF (844.825.5733) | 866.587.9158 fax
312.878.2351 direct
awardzala@pulmonaryfibrosis.org
