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A Run for His Son…and Everyone: An ME/CFS Parent Steps Out

May 21, 2017

A run for his son…

Most people in their late 60’s probably aren’t running half marathons. Alex Ribaroff had run them twice before, when he turned 50 and 60, and he swore he would never do a half-marathon again.  But here he is, at age 67, three months into his training, on the verge of doing just that.

Tom Ribaroff ME/CFS

Tom was perfectly healthy until he came down with infectious mononucleosis at age 16

This time he’s not doing it to celebrate a milestone. He’s doing it to for his son, Tom.  Tom was a strapping young man – athletic, academically inclined and outgoing – when he fell prey at 16 to an Epstein-Barr virus (EBV) infection in the UK. Getting exposed to EBV as a child is usually a piece of cake but if you encounter it as an adolescent, it’s another deal indeed; it’s a very common trigger for ME/CFS.

Tom got hit so hard he had to leave school. Two months later, still not well but itching to get back, he returned – only to get hit harder by another bout. That was five years ago. Tom is at University now, he’s hanging on but everything other than academics – sports, exercise, socializing – is out.  It’s no way for a young man to get through college.

Tom and his family went through the same experience that so many other sufferers from ME/CFS have – the fruitless search for help – the suggestions to use CBT and graded exercise.

Slowly, Alex and his wife Denise learned more about ME/CFS, the many people affected, the few experts, its marginalization and it’s need for funding.  They’ve come to grips with the fact that their young son has a debilitating and chronic illness that many have not recovered from – and they decided to try and do something about it.

They’re raising money to support ME/CFS research. It’s not like they’re experts at this. In fact, they’re complete novices, but their burning commitment to help is pushing them to do things they’ve never done before.

When I asked them why they were stepping out like this, Alex and his wife described the helpless feeling they had watching their young son get sicker and sicker.   “You expect your children to be healthy” he said, and if they’re not then “you expect the medical profession to be able to do something about it.”  No one should have to experience that feeling around their children.

By chance, a year ago, a friend of the family sent them an article from the Guardian newspaper in the U.K., talking about the research advances being made by Mady Hornig and the Center for Infection and Immunity.

Hornig MD, and Ian Lipkin, a world-renowned pathologist, have taken a special interest in ME/CFS. The blood and spinal fluid studies they’ve done in collaboration with the Simmaron Research Foundation (SRF) and other groups found that ME/CFS patients first exhibit a pattern of high immune activation which is followed by immune exhaustion.  Their joint CII/Simmaron Research Foundation cerebral spinal fluid study found a degree of  immune dysregulation similar to that found in multiple sclerosis. (An expanded study is underway). Another joint CII/Simmaron Research Foundation study identified a new class of ME/CFS patients (“atypical patients”) who have unusual disease trajectories and test results). Their latest study found dramatic differences in the gut flora which may eventually lead to targeted gut therapies.

A conversation with Hornig led the Ribaroff’s to get in touch with Dr. Peterson and the Simmaron Research Foundation.  Only then did they feel that they had found a clinician who understood this illness and might be able to help them.

When they found out how many people’s lives are blighted by the disease, and how many people’s future has been darkened by the cloud of ME/CFS hanging over them, their focus shifted. The fight became about more than for Tom.  It became a fight for everyone who has this illness.

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So, Alex at age 67 is now lacing up his running shoes for a half-marathon he didn’t ever expect to run again. He’s raising money for two groups – the Simmaron Research Foundation and Columbia University’s Center For Infection and Immunity-  that provided them with answers when they desperately needed them.

Alex Ribaroff

Alex was appalled by the helpless feeling he and wife had when Tom got sick. Now they’re doing something about that.

They’ve put the call for help far and wide to their friends, many of whom were shocked to hear the healthy, young man they’d known was struggling so much.  Jen Brea’s moving “TED talk” – now seen by over 1,200,000 people – proved to be a powerful introduction to a disorder many of them had never heard of.  Alex and Denise hope to raise $75,000 – the first $25,000 of which they will match.

The Ribaroffs are getting more involved. They’re going to meet with Dr. Peterson, Dr. Hornig and other luminaries at the London “Invest in ME” conference, to better educate themselves about global advances in research.

But first comes the run. In just two days Alex will put the memories of the last two runs aside and step out onto the track and run – for his son and everyone else with ME/CFS.

Please support Alex and Denise‘s commitment to help their son and many others with your donation to the Simmaron Research Foundation here.  (The Simmaron Research Foundation will receive half of the donations raised and will provide the other half to support Ian Lipkin and Mady Hornig in their ME/CFS work at the Center for Infection and Immunity.)  PayPal and Credit Cards accepted.

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Update: Sixty-seven year old Alex Ribaroff successfully completed the Bermuda Half-Marathon on the 25th of May 🙂

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3 Comments

  • dee

    May 21, 2017 at 6:27 pm - Reply

    what is meant by HALF? wheres the rest going?

    • Cort Johnson

      May 21, 2017 at 6:32 pm - Reply

      Sorry to be unclear. The Simmaron Research Foundation will collect all the donations. Half will go to Simmaron, and half will go to Ian Lipkin and Mady Hornig to support their ME/CFS work at the Center for Infection and Immunity. I made that clearer in the blog.

    • Sarah L

      August 21, 2017 at 7:34 pm - Reply

      Half marathon is half the distance of a full 23 point something mile full marathon. It is really hard to run. He ran in Bermuda, the island. Some folks get around!

      How they divvy up the donations, Cort is the expert on that.

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