Update 10 – December 2, 2023:
Happy Holidays to Everyone,
Our family hopes everyone who contributed to our campaign will have a wonderful holiday season. We are truly amazed at the amount of support you have all given, and we are striving to meet our goal by the end of 2023. You can help us do that by contributing a tax-deductible donation of any amount to help primarily with the costs for Janet’s Assisted Living Facility, which is an absolute necessity because of her further advanced disease and my inability to provide care due to my disability.
While it has been a challenging year, we will make it through 2023. It is hard to believe, but Janet is entering her third year at Kensington Falls Church. She was seen by a team of doctors last month at Johns Hopkins, and they are amazed that her Progressive Supranuclear Palsy (PSP) has progressed slower than expected. The doctors aren’t sure why, but her case is atypical, with the first symptoms occurring about a decade earlier than most patients.
This month is my turn, and I will return to see my team of doctors at Johns Hopkins this upcoming week. While it seems like I live at Johns Hopkins with all of my appointments, this week, I get to see their team together. From my physical therapy assessments, my Multiple System Atrophy (MSA-C) has affected my motor function moderately. We are working to address all my other body systems with medication treatment as best as we can, but it is an ongoing battle and challenge. Since the diseases are so rare, doctors must continually address the unpredictable nature of these neurological diseases.
On a more positive note, after three years at Paul VI High School, Alaina returned to her alma mater, Bishop Denis J O’Connell High School, to teach, and she is pleased. Her daughter Emma is adorable and will be 2 in March. Our sons Brad and Connor are both at UNC Chapel Hill working on their Ph. Ds in Organic Chemistry Synthesis. Brad is halfway through his third year and has completed his oral examination for his PhD candidacy in organic chemistry. Connor started in his lab and is doing well in his first-year classes.
We have asked many friends, colleagues, acquaintances, and others we have never met who have heard about our story and have been compelled to contribute. Some individuals have made significant contributions to get us to this point. With what seems like the continually rising costs of care and unplanned expenses every day, by reaching our goal in 2023, we will be at a point where we can continue to cover and maintain the expenses.
So, if you can, please consider making an end-of-year tax-deductible donation to our campaign. Your contributions are appreciated more than you will ever know, and the difference you have made in our lives with your support has been incredible. As always, if you cannot give, we ask that you continue to pray for both Janet and me as we continue on this journey.
Our family wishes you a blessed holiday season and a happy, healthy, and wonderful New Year.
Update 9 – September 16, 2023:
Janet and my conditions have continued to progress, but at a slower rate than the doctors had initially expected. The one thing I have learned from our current situation is that when it comes to medical expenses, enough seems never enough. Over the summer, I thought we were in the clear for support in the short term, but now, other unexpected fees and expenses have arisen. Please help us with a financial contribution of any amount.
The outpouring of generosity to date has been incredible, and Janet and I are so very grateful. We would not have made it through the summer without the support we have received. Please make your first donation or provide us with additional help. If you cannot contribute financially, we ask for your prayers, Janet, me, and our family.
May God bless you for your kindness and generosity!
Update 8 – July 12, 2023:
As we are approaching six months since the campaign began, I am pleased to inform you all that due to the generosity and kindness of many, we have reached 53% of our initial goal. I cannot thank those who have contributed enough for your support. Being ongoing terminal illnesses, our needs are endless.
It would be very beneficial and highly welcome if you could make an initial or an additional contribution to the campaign.
I want to extend my thanks to two extraordinary people. The first is to my former colleague, mentor, and friend, Tom Menighan, Current Partner of Pharmacy Advisors and the former Chief Executive Vice President of the American Pharmacists Association, for coming up with the idea of using crowd-funding as a solution for me and my wife’s unexpected and extraordinary financial need. Secondly, thank Jann Skelton, President of Silver Pennies Consulting, a former colleague, mentor, counselor, and friend, for all her help and support. Her expertise in fundraising is exceptional, and her encouragement and support are genuinely inspiring.
Thank you to all who have contributed, prayed, and helped us on this journey.
Update 7 – June 15, 2023: It is hard to believe that in just under six months, we raised 52% of our highly ambitious goal needed for the long-term care of Janet and me. From small to unbelievably large donations, we have 379 contributions, with several individuals donating multiple times. We are so grateful to those who have made their tax-deductible donation to help us. We ask, if possible, that you make an additional donation to assist us in the long term. For those who considered donating, please seriously consider donating any amount you can. With these diseases being unpredictable in how long we will need care and when we need higher levels of care, our crowd-funding effort through this campaign is preparing for those future expenses. We ask for your prayers if you do not have the means to contribute. While we are both progressing, fortunately, it is currently slow.
A huge thank you to our 379 contributors who have stepped up and helped us, those we know, and those who donated anonymously. Each of you has helped us more than you will ever know. May God bless you all!
Update 6 – May 30, 2023: Janet and I met with our neurologist at Johns Hopkins on May 24. Fortunately, our diseases have progressed slightly slower than expected due to the exercise, physical therapy, and occupational therapy we have both undergone.
I am so pleased to report that we passed the 51% mark in our fundraising goal. I cannot thank everyone who has contributed to help us enough, with some individuals making three or more contributions. We appreciate the kindness, generosity, and support from our friends, former colleagues, and acquaintances. It has been truly inspiring.
Thank you to everyone who has contributed to date. Your kindness and generosity have helped Janet and me in so many ways, including helping to keep Janet in the same Assisted Living Facility where she feels comfortable rather than having her move to another location before she enters a Skilled Nursing Facility.
While we have already raised a substantial sum, our financial need will continue for some time since there is no treatment or cure, and the need for care will continue to intensify. If you have already contributed, thank you, and consider if your situation will allow you to make an additional contribution. If you have not yet contributed, please consider donating any amount you can.
Once again, thank you all for your kindness and generosity. Your help is appreciated more than you will ever know. May God bless you all and keep you in his care always.
Update 5 – May 1, 2023: My wife and I have been overwhelmed by the support and contributions in only three months. As of this past week, we officially passed the 50% mark of our goal. We have been overwhelmed by many colleagues, friends, relatives, and some individuals we have never met who have been so kind and generous. We have been able to thank those whose names we know, but many have chosen to donate anonymously. To all who have contributed, we are incredibly grateful.
Janet and I will be evaluated by our neurologist specialist in a few weeks to determine the progression of our diseases. If it is determined that Janet requires additional care beyond assisted living, she will most likely transition to a skilled nursing facility. Hopefully, that will not be the case. Either way, the cost of care for both of us continues to accrue. The contributions to date have helped us tremendously. However, to meet our long-term needs, we must continue to push forward with our efforts.
If you have already contributed to our cause, we would greatly appreciate any additional assistance you can provide. If you have not already donated, we ask that you consider donating. If you cannot contribute, we kindly request your thoughts and prayers. Thank you all once again for your kindness and generosity.
Update 4 – March 23, 2023 – Yesterday marked a significant point in our campaign as we reached and exceeded $75,000. The generosity and kindness of all those who have contributed have been genuinely excellent. Some individuals or groups have made multiple donations, which is extremely kind. Janet and I know that not everyone is able to give a significant gift. Donating $35, $50, or $100 will help tremendously reach 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 receiving your tax refund. We sincerely thank everyone who has helped us in our time of need. May God bless you all!
Update 3 – February 18, 2023 – The outpouring of support from friends, colleagues, acquaintances, and 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 many ways. As I have said, please donate if you can, and if you are unable to, your prayers are most definitely welcome and sincerely appreciated.
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. We have raised nearly one-third of our goal in only nine days of this campaign. If you have thought about donating 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 can 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 increase as our diseases progress. Contribute if you can, and if you are unable to, your prayers are most definitely welcome and sincerely appreciated.
Update 1 – January 31, 2023 – Thanks to the generosity of many supporters in only four days, from minor to huge 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 cost of care for one person is overwhelming.
_______________________________________________________________________________________________________Our Promise – Please be assured that all the money raised in this campaign will go entirely 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 complex 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). We 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 sporadic 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 (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 eventually diagnosed, she was so impaired and incurred so many falls that she had to repair her cervical spine and could never return to work. The doctor who confirmed the diagnosis believes the disease likely began to surface in 2014 or 2015.
In December of that same year, I began experiencing my 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, the pandemic had caused its issues in late April. Luckily, a neurology specialist reviewed my records through a friend and the power of electronic health records and information sharing. When I met with him on May 15, 2020, he diagnosed me with another condition my wife had never heard of: Multiple System Atrophy Cerebellar Type (MSA-C). While distinctly different from my wife’s PSP, MSA-C is 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 good news, if there is one, is that my neurologist at Johns Hopkins estimated my disease to have started approximately two years before diagnosis; however, by the early summer, the disease had progressed to impairing my ability to work. The condition 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 house, 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 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 care facility, our costs will at least double. While I ordinarily would not ask for anyone’s monetary help, our situation is desperate. I am hopeful that people we know, and perhaps those we don’t know, would be kind enough to make whatever contribution they can. If you cannot help us financially, we kindly ask for your prayers for Janet and my family.
Learn more about PSP and MSA
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 2000s, 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 leading the pharmacy profession into the future. A very gracious person, Anne Burns, hired me in 2007 at the American Pharmacists Association and mentored and trained me in association management. It seemed that 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’ most extensive and bustling 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 became 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 50s. Isn’t it strange how unpredictable life can indeed be?