Many of you that know me, and know how much I travel. Occasionally I am asked- ‘what do you like to do when you’re not traveling for work’? My reply? “Travel for fun”!
But in May 2014, I was diagnosed w “Mumford and Sons”. Ok its MS, or “Multiple Sclerosis”, but I just try to make a very uncool disease sound a little bit cooler to take my mind off the tragic, senseless loss of functions, and mobility, notwithstanding the constant pain and fatigue.
Many advances have been made in the medical field for MS that slow the progression of the disease, but there is no cure and there is no stopping the inevitable outcome of permanent disability. In the course of 4 years, I have been on two different treatments, the latest and strongest available- Tecfidera and then Ocrevus, which have been very costly. This has been a great hardship on us, to say the least. The real challenge has been however, that my condition has continued to deteriorate with walking and doing most physical activities extremely hard. Even more challenging is the stress brought from fatigue/exhaustion, extreme sensitivities to heat and the “cog-fog”, or simply the ability to think and to concentrate.
MS is a cruel disease, taking most of the things I enjoy in my life away from me and my family. Yes, they have suffered along with me and made countless sacrifices for me along this journey.
But there is one and only One treatment to permanently STOP MS, and it is HSCT. Hematopoietic Stem Cell Transplantation.
Hematopoietic Stem Cell Transplantation attempts to “reboot” the immune system, which is responsible for damaging the brain and spinal cord in MS. In HSCT for MS, blood cell-producing stem cells, which are derived from a person’s own bone marrow or blood, are collected and stored, prior to depleting much of the immune system using chemotherapy drugs. Then the stored hematopoietic stem cells are reintroduced to the body. The person remains in the hospital for an additional period of time while the immune system begins to rebuild itself. The immune system gradually rebuilds itself anywhere from 3 months to a year.
I have been accepted to Pirigov Hospital in Moscow with Dr. Denis Fedoreno, a world-renowned Miracle Man in this field.
I begin treatment on October 22, 2018, so some very short 5 months away! This is terribly exciting and at the same time terribly stressful. Stressful in the sense of how much preparation is involved, providing care for Lynn as she accompanies me, taking care of my business activities for a period of time, and most of all, for the cost of the treatment. It is $50,000 USD for treatment, including the hospital stay in Russia, and then another estimated $10k for travel and logistics (including lodging for Lynn). Treatment will take approximately 30+ days, so we will be away for some time. And unfortunately, insurance does not cover any of the cost. My goal is to raise $40,000.
Despite the difficulties, I have maintained a full-time work schedule, including travel of 100k to 150k miles of flying every year, convention schedules, customer meetings, board meetings, and various other work activities. I have done everything in my power to hold on to a career and job that I love and support my family while doing so. I like to say- “I don’t quit when I’m tired, I quit when I’m finished!” But this dedication has come with a price. A steep price, both physically and mentally.
But with a glad heart, I have been Blessed with receiving a “Golden Ticket” (Willy Wonka reference, but you got that, right??) It is worth more than all the Gold in the world, but it also comes with the price of Gold! So far, I have never asked for any help along my journey, but honestly, I am at the point where I must humbly call upon friends and colleagues to consider “investing” in me to help me get my life back! This is a matter of My Life, or a Life left of diminished probabilities and possibilities.
I miss taking walks, I miss being able to go out for dinners, to see friends, to make plans and NOT having to cancel, to travel to see the balance of our bucket list, and mostly to be able to practice my violin without excruciating pain in my hands and arms. The list of “I miss” is long, but the chance of doing these things again is Great. Great is His Faithfulness……
I do not do this or ask this lightly, it has come from prayerful consideration and a great deal of humility. The fact is, there is a solution, I can see it, I can almost touch it, but I need your help.
If would consider playing a part in ‘Reclaiming My Life- 2018”, I would deeply appreciate your help. You can make a donation using the link below-
- John Erbacher
- Nicole Cox
- Jean Allen
- Russell Rogg
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