Why Matt needs HSCT now (not later) to beat MS

If you are just now finding this page or hearing our cause, my husband Matt was diagnosed this year with MS. We are running our Christmas Raffle through noon ET tomorrow (Friday 12/17) as part of a larger effort to raise $70,000 to pay for a treatment called Hematopoietic Stem Cell Transplantation (HSCT).

It has been interesting and yet difficult learning about MS, watching Matt go through his relapses, and trying to fundraise so he can pursue HSCT to stop his MS. I think the hardest part is watching what the disease is doing to Matt, though I never want to have to fundraise this much money ever again!

Matt's first relapse went from the end of February to mid-July this year. He only made it to mid-November before his second major relapse hit.

Matt just started occupational therapy and physical therapy as his MS has been causing spasticity (a sort of tightness or stiffness) in the muscles in his arms and legs. If often causes tremors and difficulty gripping things with his hands. In Matt's legs, different groups of muscles in his legs have difficulty engaging so that his weight is supported properly when he is standing or walking.

Alongside the spasticity, there is regularly a soreness and random burning feeling that moves through different parts of his legs. Vertigo is a new symptom with this relapse that hits him at times.

While some MS patients luck out and don't have much trouble with their MS relapses through much of their life, Matt's first year so far with the disease has been a rough one. It makes me truly grateful to know that there is hope in sight that we can stop his MS from progressing.

While HSCT is not a cure for MS, as the disease can potentially come back and nervous system damage cannot be reversed, it is the most effective, scientifically proven treatment for MS. Also, unlike MS drugs which only slow the disease, HSCT stops disease progression. Hopefully, one day we will see medical advancements reach a point that we can not only stop the disease, but reverse the damage from MS.

As we've been fundraising, we often. get asked these four questions.

• First, what is this treatment?

• Second, why aren't you getting it done in the United States? (Really, people are asking why Matt is going to Moscow of all places for this treatment?)

• Third, why are you raising money to pay for it?

What is HSCT?

I'm going to be brief here. Our blog has a page dedicated to what this treatment is and why we have chosen Dr Fedorenko and his team in Moscow.

Essentially, the reason HSCT is such an effective treatment for MS is it uses chemotherapy to wipeout the existing immune system and uses the patient's own stem cells to then reboot the immune system.

While there are other stem cell therapies out there, they are not effective for MS as they do not using anything to reboot the faulty immune system so it stops attacking the nervous system.

Why Moscow?

First and foremost, wouldn't you want to get the most experienced doctor in the world with HSCT to do this treatment? Dr. Fedorenko has treated over 1500 MS patients with HSCT through last year. He has done over 200 more treatments on MS patients so far this year.

Add the fact that Dr. Fedorenko does HSCT to treat a wide range of autoimmune disorders, Dr. Fedorenko has done over 2500 HSCT treatments. I cannot imagine anyone I'd trust more to have my husband go to for performing this procedure.

Second, Dr. Fedorenko is constantly working to improve his treatment protocols to ensure it is as safe as possible for patients. He has just finished working out a new treatment protocol so that his patients with extra risk factors like diabetes or obesity are able to be safer while undergoing treatment.

One of the reasons we chose Dr Fedorenko and the national research hospital in Moscow is that Matt will also be in the hospital the entire month he is there undergoing the treatment. He runs a much smaller risk of picking up a virus or infection as he will be in the same place throughout his treatment. Plus, Dr Fedorenko and his team work very hard to strictly follow sanitation protocols to keep the patient areas clean.

Pursuing HSCT means that the immune system is extremely vulnerable until it starts to bounce back. There are very few sites throughout the world that keep the patient in the hospital until the immune system is recovered enough. Another option we considered was an HSCT site in Mexico, but it has patients stay in an apartment when not doing something directly related to the hospital.

Why are you fundraising?

On our blog, we also discuss why treatment in the US is not feasible. Highlights of those reasons include the fact that the US is only looking at this as a last line of treatment for MS when other MS drugs have failed.

For us, this is no option at all as MS damage is not reversible, and HSCT provides an opportunity to stop MS from doing the damage in the first place. Dr Fedorenko promotes this as a first line treatment for MS for this reason.

The other big reason is that HSCT here in the US is six figures and not covered by insurance as it is not FDA approved despite HSCT's 20 year history as an MS treatment. I won't go into our suspicion that the pharmaceutical industry has been a large reason for this - they will lose a lot of money just getting it approved as a last line treatment, let alone a first line treatment.

Since insurance won't cover it and Matt has to go out of the country to pursue HSCT treatment, we need help covering the cost of the treatment, travel expenses, and to help ease the financial stress that will result from Matt being on short-term disability leave for 3-4 months while he pursues the treatment and recovers enough to return back to work.

Thankfully, we have had overwhelming support since we launched our fundraising campaign at the beginning of November. We've raised $32,825 so far and will likely reach the half way mark for our fundraising goal in the next few weeks.

However, we still have a ways to go and need all the help we can to increase awareness of our fundraising campaign. Matt is scheduled to pursue HSCT treatment on March 16, 2022 and needs to make the payment for the procedure itself by March 1, 2022.

Though, we will continue to fundraise until May 1. If we are still short to cover the procedure as we get into February, we plan to take out a 401K loan to cover the shortfall. We are doing this - one way or another.

So please, donate through Venmo (@kafowler16) or GoFundMe (link).

Share our fundraising campaign on social media and with friends and family.

Watch and share our main fundraising video - Matt still has an ongoing commitment to learning and recording the Napoleon Dynamite dance if it reaches 1000 views.

Participate in our current raffle that runs through tomorrow and be on the lookout for other raffles in the coming weeks and months.

Anything to help expand our outreach is greatly appreciated!

Thank you so much!