What we need is $45,000 for a Multiple Sclerosis treatment called HSCT (hematopoietic stem cell transplantation). This treatment has been shown to halt the progression of M.S. for many patients, but it has only been available in U.S. clinical trials (which are extremely hard to be accepted into) OR outside the U.S. — making it expensive and not covered by insurance. Kevin has cycled through many of the M.S. drugs offered here, and still suffered a horrible M.S. relapse four years into established treatment. HSCT — if we can get it — will hopefully halt the disease in its tracks as it has for many others. It is the best possible treatment for Kevin and will allow him to keep the mobility he has — which is why we’re reaching out for help. As HSCT can be quite a rough recovery it’s urgent that we do this while Kevin still has the energy to endure it.
Many of you know Kevin — he doesn’t want to bum you out or be the center of attention. Kevin prefers working on projects behind the scenes. But in case you’re not familiar, Kevin’s responsible for almost all the 15+ years of RVNG Intl.
design along with an array of projects for White Columns, Tim and Eric, R Bar, and Sundance Foundation as Will Work for Good
. Kevin supported me when I went back to school to study design research at SVA and it was Kevin’s interests that led us to the Netherlands to do a residency at Jan van Eyck. And I’m so grateful because it was these experiences that brought about some of our dearest projects and relationships with KIAD
, Data Feels, Policy People
, Canaries, +++. So, as his partner in life and work, I’m stepping in to write on his behalf.
Kevin was first diagnosed with Multiple Sclerosis in 2015 when, after a bit of walking, his foot would begin to trip him up more and more — to the point where he was dragging his leg. Needless to say the subsequent hospital stay, spinal tap and now routine MRIs were a major life adjustment and an incredibly scary time, but we persevered and adjusted to our new reality / way of life. We learn a lot from the disability work of writers and artists like Mia Mingus, Leah Lakshmi Piepzna-Samarasinha, Johana Hedva, Carolyn Lazard, Constantina Zavitsanos, Park McArthur, Alison Kafer and others. <3 And we have so much gratitude for the incredible support system of family, friends and colleagues that stuck by us <3
May 2018, Kevin suffered an M.S. relapse, and new lesions on his spine left him with severely impacted mobility. An assortment of neurological issues struck rapidly over the course of several weeks. He’d wake up and not be able to do something he could do the day before. Kevin was unable to lift his arms to eat with a fork, brush his teeth, put on a shirt, or drive. Loss of balance led to a nasty fall. Using a rollator, he couldn’t walk more than a few yards without his legs becoming tight, heavy and then immobile.
Kevin had almost full recovery from an earlier relapse about four years ago, but doctors warn he’s unlikely to rebound as strongly this time. Over the last few months much of Kevin’s upper body movement has been restored but his walking is still compromised. He uses trekking poles when we go out and walks (slowly) for up to 15 minutes before needing a break. He does physical therapy regularly, maintains a pretty good diet, and started a different drug in July 2018. It’s an infusion treatment so he spends a few hours at a cancer center every month hooked up to an IV. Luckily, Kevin can work from home which accommodates the issues of M.S. fatigue. We don’t get out quite so much and have some serious FOMO. Mostly we dread what the next relapse could bring. While we don’t have infinite resources to pay for care, we make do together and Kevin has been dealing with the changes in his life quietly and with extraordinary resilience. This is part of the reason why getting Kevin the HSCT treatment he needs and halting the progression of the disease is so important — so we can adjust to our new reality without as much fear of another relapse.
ABOUT MULTIPLE SCLEROSIS:
M.S. is a chronic disease of the brain and spinal cord (the cause is unknown) where the immune system attacks the central nervous system — with an unpredictable range of minor to extremely debilitating symptoms. There are many drugs for M.S. that try to slow the progression of the disease or the frequency of relapses. Kevin’s already cycled through a few of these drugs over the years, and only has a couple options left to try. Current M.S. drugs only work to potentially slow the disease — there is no cure for M.S. In all our research, by far the best option is HSCT (hematopoietic stem cell transplantation). While not a guarantee, it's shown to halt the progression of M.S. (as well as other autoimmune diseases) for most patients.
HSCT is a treatment that is performed in cancer centers on a regular basis — it’s a variation of a bone marrow transplant. For M.S. patients it works like this: the patient’s own stem cells are harvested. Then the patient goes through high-dose chemotherapy to destroy their existing immune system. Then their stem cells are reintroduced to aid in the generation of a new immune system — hopefully one that stops attacking the nervous system! It’s like Kevin gets to reboot his system.
Despite strong evidence
developed since the1990s that it’s superior to all existing M.S. drugs, HSCT is not yet approved for M.S. treatment in the U.S. Unlike actress Selma Blair
, Kevin wasn’t accepted into the HSCT clinical trial at Northwestern University in Chicago. That trial has recently closed and the doctor who ran the trial is writing a textbook for the treatment while pursuing FDA approval. Approval is not anticipated to happen for a couple of years and HSCT will likely be as challenging to obtain as being accepted into the clinical trials.
Because HSCT has been shown to be so effective, it’s approved in many other countries (Russia, Mexico, Germany, Singapore, UK, Sweden, among others) and some like Russia and Mexico offer it for non-citizens. We want to travel to Clinica Ruiz in Puebla, Mexico which has accepted Kevin. It’s something that we’ve been talking about for the past four years and we’ve followed along with patients’ experiences at this and other facilities. It’s a month-long process
and an apartment is included so Kevin doesn’t have to stay in a hospital when vulnerable to infection. Now is the time for Kevin to get treatment.
If we can get Kevin the treatment before another relapse, HSCT will likely save him from losing further mobility. Last summer dear family friends, the Gentilcores, sent us a check out of their concern. It gave us the push to start a fund. We have about $9,000 saved so far and need another $45,000 to meet the $54,500 clinic fee. It’s a lot to ask. But in case you wondered if there was anything more you could do for Kevin — this would be it. I mean, aside from sending him a message which he always appreciates! Feel free to spread the word. Every little bit could help make this happen for Kevin. It’s the best chance we’ve got to keep Kev’s dry humor and rad design in our lives. Think of the cats
! Many thanks and take care ✌️
And feel free to ask us anything!
BTW - If you prefer not to use gofundme or prefer to donate offline, please email me at: karisa.senavitisATgmailDOTcom