Our Promise – Please be assured that all of the money raised in this campaign will go completely to treatments, care and associated medical, assisted living, long term care, hospital and other costs associated with battling PSP by Janet and MSA by Jim. Any residual funds, if any, will be donated to CurePSP, John’s Hopkins Neurological Research or the Healing Hearts Respite House > Non-Profit Charity Virginia (healingheartsrespitefoundation.org) that helps families experiencing difficult health challenges and providing desperately needed respite care.
Our Ask – A donation of any amount to help support the costs of expensive therapies, ongoing physical and occupational therapy, extensive medical care, care in an Assisted Living Facility, and when ultimately needed, to help pay for Nursing Home care for a young wife and mother, Janet Owen, as she suffers from a rare terminal neurodegenerative disease called Progressive Supranuclear Palsy (PSP). And for myself, Jim Owen, a young husband and father afflicted by a similar degenerative brain disease, Multiple System Atrophy Cerebellar Type (MSA-C). Both of us will ultimately end up in a Skilled Nursing Facility until these incurable diseases claim our lives.
The Reason for Our Need – In September 2019, our seemingly perfect life became uprooted when we learned that my wife, Janet Owen, who was then 51, had a very rare terminal neurodegenerative disease called Progressive Supranuclear Palsy (PSP) which many, including my wife and I both as pharmacists, had no awareness about. PSP is closely related to diseases like Parkinson’s Disease, Alzheimer’s Disease, and Lou Gehrig’s Disease (ALS). The cause is unknown, but it results in substantial damage to the brain, interfering with its function, and ultimately resulting in death 5-9 years from symptom onset. When Janet was ultimately diagnosed, she was so impaired and incurred so many falls that she had to repair her cervical spine, and was never able to return to work. The doctor who confirmed the diagnosis believes that the disease likely began to surface in 2014 or 2015.
In December of that same year, I began experiencing my own set of problems, which I incorrectly assumed were due to a lower back problem; however, I was wrong. My family physician referred me to specialists, who referred me to other specialists. I had test after test and MRIs of every single part of my body. Ultimately, I was referred to a local neurologist, who said, “we have no idea what is wrong with you, so you should go to Johns Hopkins”. As you may recall that was at the beginning of the pandemic, and by my referral to Johns Hopkins, in late April, the pandemic had caused its own set of issues. Luckily through a friend and through the power of electronic health records and electronic information sharing, a neurology specialist reviewed my records and when I met with him on May 15, 2020, he diagnosed me with another condition that my wife and I had never heard of called Multiple System Atrophy Cerebellar Type (MSA-C). While distinctly different from my wife’s PSP, MSA-C happens to be also in the same family of diseases as PSP. However, unlike my wife’s disease, the disease affects the nervous system throughout the body in addition to causing degeneration of the brain stem. In my case, it impacts the cerebellum, which impairs my ability to walk. The one piece of good news, if there is one, is that my neurologist at Johns Hopkins estimated my disease to have started approximately 2 years prior to diagnosis, however, by the early summer, the disease had progressed to the point of impairing my ability to work. The disease usually results in death in 8 to 11 years from symptom onset.
My wife and I dealt with our diagnosis the best we could until November 2021. With my disability and the fact that we owned a 2-story home, it became impossible for Janet to live in our home. At age 53, she entered an assisted living facility. We sold our home, and I began renting a small 1-story home relatively close to her facility for me, our dogs, and my sons when they were home from college and graduate school. Ultimately, we will both end up in a Skilled Nursing Facility where we will spend our final days while these two diseases that have no effective treatments. This type of care is even more costly than our current situation. Going from a 2-family income family with two kids still in college to neither of us working was challenging, to say the least, and now has led us to a position where we have exhausted our retirement savings, burned through the capital gains from our house, are deeply in debt and behind on my wife’s monthly facility fees.
When I have to enter a facility for care, our costs will at least double. While I ordinarily would not ask for anyone’s monetary help, our situation is desperate, and I am hopeful that people that we know, and perhaps those that we don’t know, would be kind enough to make whatever contribution that they can. If you are not able to help us financially, we kindly ask for your prayers for Janet, myself, and my family.
Update 4 – March 23, 2023 – Yesterday marked a significant point in our campaign as we reached and exceeded $75,000. The generosity and kindness from all those who have contributed has truly amazing. Some individuals or groups of individuals have made multiple donations which is extremely kind. Janet and I know that everyone isn’t able to give a large donation. A single donation of $35, $50 or $100 will help tremenously in reaching our goal. You can always come back to the site at GiveTaxFree if you would like to contribute more in the future, for example after you receive your tax refund. We appreciate and sinceely thank everyone who has helped us in our time of need. May God bless you all!
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Update 3 – February 18, 2023 – The outpouring of support from friends, colleagues, acquaintances and complete strangers has touched our hearts. We still have a long way to go to reach our goal since these diseases are highly variable in duration. If you have already given we ask that you consider an additional contribution, If you haven’t contributed yet, we ask that you make a contribution that will help us in so many ways. As I have said, please contribute if you can and if you are unable, your prayers are most definitely welcome and sincerely appreciated.
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Update 2 – February 7, 2023 – Janet and I are so grateful for the outpouring of support and feel so blessed that we are surrounded by such a wonderful community of people willing to help us. In only 9 days of this campaign, we have been able to raise nearly one-third of our goal. If you have thought about making a donation and haven’t done so yet, please know that your contribution no matter what the amount will help us tremendously. If you have already contributed and are able to make an additional tax-deductible donation, please do so. As with everyone the future is uncertain, but we know that while our financial needs are substantial now, they will become greater as our diseases progress. Contribute if you can and if you are unable your prayers are most definitely welcome and sincerely appreciated.
Update 1 – January 31, 2023 – Thanks to the generosity of many supporters in only 4 days, from small donations to very large donations, we have successfully raised nearly 25% of our campaign goal. If you have already donated, thank you. Your support is truly appreciated. If you haven’t contributed, we ask you to reconsider. While the campaign goal seems high the costs of care for one person is mind boggling, let alone the cost of treating two people. As we stated we know everyone will not be able to support this campaign. If that is the case remembering us in your thoughts and prayers is always welcome and appreciated. Please remember that even if you have already contributed to this campaign, you are certainly welcome to make another tax-deductible contribution as both Janet and I have a long road ahead of us.
Learn more about PSP and MSA
PSP
What is progressive supranuclear palsy (PSP)? – YouTube
you tube progressive supranuclear palsy – – Video Search Results (yahoo.com)
MSA
multiple system atrophy cerebellar you rube – – Video Search Results (yahoo.com)
you tube multiple sysytem atrophy – – Video Search Results (yahoo.com)
Our Back Story – Thirty-six years ago, I met my future wife, Janet Murphy when we transferred from other colleges and became students at the Philadelphia College of Pharmacy & Science. We graduated and got married in 1990. Through Janet’s prior work experience with a phenomenal family-run, regional chain pharmacy called Happy Harry’s, Janet, and I both spent what we didn’t know at the time would be half of our professional lives working for this tremendous organization in various positions.
In 1996 we welcomed our first child Alaina, with some drama when Janet developed appendicitis at 28 weeks and her appendix burst during the surgery. In 1999 and 2002, Alaina’s two brothers Brad and Connor arrived, and our lives seemed perfect. In the early 2000’s, I began a Doctor of Pharmacy Program, which I finished in 2007. In 2007 when Happy Harry’s had an ownership change, Janet and I decided to venture out and try something new; a career in the non-profit world, working beyond the boundaries of one company. We were excited to focus on projects and initiatives that would lead the profession of pharmacy into the future. A very gracious person, Anne Burns, hired me in 2007 at the American Pharmacists Association and mentored and trained me in the world of association management. It seemed every day I was learning something new, and ultimately by the time I left on disability, I was APhA’s Vice President of Practice and Science Affairs. In addition, for ten years, from 2008 to 2018, I worked as an intermittent pharmacist in the evenings and on the weekends at the National Institutes of Health (NIH).
While I was working at APhA and NIH, Janet was learning new skills working for a managed care organization, ultimately managing one of the organizations’ biggest and very busy facilities, not only for their outpatient pharmacy but for the entire facility, including their clinics and even their surgical suites. When her symptoms became too severe to serve in that capacity, she transitioned to be one of the organization’s clinical pharmacy supervisors.
We were in the prime years of our personal and professional lives. We had one grown child in graduate school and 2 in college, when we were diagnosed in our early 50’s. Isn’t it strange how unpredictable life can truly be?