In July of 2017, I went from Ironman ready to paralyzed

Eventually diagnosed with Chronic Inflamatory Demyelinating Polyneuropathy (CIDP), I would spend months in the hospital repeatedly making progress and then relapsing. My body attacks its’ own nervous system, eating away the nerves’ coating and damaging the nerves themselves.

Over and over. Again and again.

[Summer of 2017. Living at SRALab with the best therapy team in the world. Somewhere between my 2nd and 3rd relapse]

CIDP is an autoimmune disease with few treatments, and often bleak outcomes

50% of those with CIDP don’t go back to work. 41% need assistance to walk or remain in a wheelchair

Three years after diagnosis I am in BOTH categories; aggressive daily medications, weekly hospital treatments and old fashioned hard work have been a life saver, but they can’t halt my disease. I use braces to run and bike, a crutch to walk without my braces, and the increasing frequency of vestibular migraines, crushing fatigue, and pain have made it impossible to function as a scientist. I’m unemployed.

I have tried every treatment option available in the USA, and have pestered every MS and CIDP researcher willing to take my call regarding experimental options and clinical trials. No dice.

One of those options was right here at Northwestern University. Aggressive chemotherapy paired with stem cell reinfusion (referred to as hematopoietic stem cell transplant - HSCT) has been shown to CURE ~85% of patients in clinical trials for both MS and CIDP. CURE. As in, no additional treatment needed. Last year, the pioneering lab at Northwestern shut down their program just one month after enthusiastically agreeing to treat me. True story.

BUT researching the Northwestern protocol and related literature familiarized me with HSCT clinics and research labs worldwide, which repeatedly brought Clinica Ruiz to my attention.

To date, Clinica Ruiz has run their chemo/HSCT protocol on more than 3000 people suffering from debilitating autoimmune disease, with a survival rate of >99.7% and a success rate of >85% for MS and CIDP specifically. I've spoken to (grilled) their doctors extensively regarding the details of their treatment and safety protocols. I've talked to former patients and sought out as much information as I could get my hands on. This is a fully accredited institution whose leaders have received coveted distinctions worldwide. I can say with full confidence that I am tremendously impressed, and eager to put my health in their hands.

I did not start this journey thinking it would lead me to a clinic in Mexico. A shocking revelation, I realize. In the last 3 years I've spent > $50k on my medical expenses and insurance premiums - trust me when I tell you I'd very much rather Blue Cross Blue Shield be footing the bill, and doing so right here at home. I would also rather that my taking part in an experimental procedure would both be giving me a shot at real recovery AND supporting a clinical trial to help bring a viable treatment to more people. I tried. Please know I tried. I'm tapped out, friends. But I am not without hope.

On October 25th, Tony and I will be flying to the Clinica Ruiz facility in Monterrey Mexico to get this party started. The combination of a viral pandemic and the induced destruction of my immune system means that we will be spending the whole of our time there - a minimum of a month - in isolation within our small clinic-provided apartment. The survival rate from THAT may well be below 99%

Please know that this fund-raising campaign is the most awkward I have every put my name to. Over the years I have been tremendously honored to raise supporting funds and research dollars for a myriad of worthy causes, and I genuinely believe the generosity shown by our interconnected communities has brought tangible benefit to so, so many people. To ask for personal help is tremendously uncomfortable. But I recognize that my way back to being a productive member of society is to get out of this hole - and I have reached the point where I require a boost. Thank you for taking time out of your day to read this far. For pulling for me, and for cheering me on. For lending a hand. I will forever endeavor to pay it forward.

(Note: The $70k in this campaign comprises my outstanding healthcare costs for 2020 alone, of which $55k is specifically for chemotherapy/HSCT)

CURE CIDP - IronLynn Goes to Mexico

By Lynn Rogers

CURE CIDP - IronLynn Goes to Mexico

Medical Expenses for Experimental Chemotherapy and HSCT