This has been a tremendous year for us in the Vitiligo Clinic and Research Center at UMass Medical School. It’s fun to reflect at this time and to think about the hard work done for vitiligo and its potential global impact! I am currently on a much-needed vacation with my wife’s family near Chicago, and I’m using some of my downtime to think and write this summary about the year. There were some ups and downs, but mostly ups, and next year promises to bring even more excitement.
World Vitiligo Day
For starters, June 25thbrought us the World Vitiligo Day conference, which we hosted at UMass Medical School, here in Worcester this year. We had hundreds of attendees from all over the world, including individuals with vitiligo, their family and friends, dermatologists who treat them, scientists who conduct vitiligo research, a former fashion photographer and another photographer with vitiligo (they took lots of great pictures that you can see here), a vitiligo model, celebrity reporter, as well as others! We had a bunch of fun together listening to some great talks, as well as dancing and singing karaoke. You can read a full blog post about our conference here, and even see some video that we captured and posted here. We announced that our next WVD celebration will be in Houston, Texas, on June 21-23, and you can already register.
Vitiligo International Symposium
The second biannual international research conference for vitiligo, the Vitiligo International Symposium, was held in Detroit in November. The first was a great success held in Rome in 2016, and this year had just as much impact. Scientists and physicians from all over the world came to talk about their work, and we hosted a patient panel session that included physicians, researchers, pharmaceutical representatives, and patient advocates who discussed the successes and challenges that face us as we all work to find better treatments and a cure for vitiligo. We left encouraged for the future of vitiligo, and reminded how many care deeply about those with vitiligo – we make a great team, and we are making a difference!
Clinical Trials and Treatments
We began participating in our second clinical trial to test a new topical treatment for vitiligo in 2018. We announced this in our newsletter to help recruit subjects for the trial – if you didn’t receive that newsletter and would like to stay informed as new trials become available, please sign up. We expect to announce enrollment for a third trial this year, which is great news for patients who want better treatment options. I cannot overstate the importance of those who volunteer to participate in these trials – without you, these treatments would never become available for the millions who need them.
You are the real heroes!
We continued to expand our treatment of vitiligo patients using the melanocyte-keratinocyte transplant procedure (MKTP), a surgical option for vitiligo that is only offered in a handful of locations in the US. We treated our 41st patient in 2018, and for the right candidate, it’s a great option! We have also studied how to improve the procedure, and hope to report this soon. You can read more about MKTP and who are likely to benefit from the procedure (surgical treatment for vitiligo).
I would like to thank all of my patients who have agreed to help us in our research, many of whom came in for a separate visit and spent a couple hours of their time to let us sample their skin. We developed a technique for this using a suction machine that generates blisters on the skin of patients, and we are using this to isolate cells from spots of vitiligo as well as unaffected patient skin and healthy skin for comparison. In this past year we sampled our 150th subject using this technique, and it has provided a wealth of data at a higher resolution than we have ever been able to acquire previously. This is how we make sure that the work we’re doing in our mouse model of vitiligo is relevant to human vitiligo, and the insight we have gained has had a great impact. We’re excited about future breakthroughs using this technique and the data it has provided, but without my generous patients who have agreed to contribute in this way, we would be nowhere!
Talking about the future, we are very excited by one of the studies that we published this year, which we think will provide a much better treatment option for patients in the future. We discovered that a new immune pathway, initiated by IL-15 signaling and its formation of autoimmune memory T cells, was responsible for the observation that vitiligo usually returns soon after stopping treatments (yes, even the new JAK inhibitors). We also found that targeting this pathway therapeutically was very effective at reversing the disease in our mouse model, and the results were long-lasting! We are hopeful that trials in humans will be coming in the near future, and that this will be a “game-changer” when it comes to treating patients with vitiligo. Read more about that discovery.
All Hands On Deck - Fundraising campaign
While we are surely excited about new treatments for vitiligo, particularly those that could have long-lasting benefits, we are still in the hunt for a cure. That is a difficult task (read why here), but we are up for the challenge! To help support our work toward a cure, we launched a fundraising campaign to seek the significant amount of resources that it will require to reach that goal. Fortunately, we have used some donations and a subsequent NIH research grant to acquire a significant amount of data about human vitiligo, and we believe that better treatments, and even the cure for vitiligo, is hiding somewhere in that data. Our problem now is to try to find it! To do that we need more “hands on deck” to work on analyzing and following up that data, which will require some serious funding. Without additional funding we estimate we can get there in 20-30 years, but hope to accelerate this if we can grow our team in a meaningful way. We have already received support toward this effort – thanks to those who have contributed, both small and large donations! If you would like to help with this effort, you can read more about it here!
Finally, I would like to comment on what started as a “low point” for me. After we published our paper on vitiligo memory cells and IL-15, our story was picked up by the international press, whose article was read by over 33,000 people all over the world in just a few days. However, one of the responses, instead of excitement about the possibilities, was outrage at how I had characterized vitiligo in the article – as a disfiguring disease that needed attention, research, better treatments, and a cure. This and other similar events launched a discussion, most of the time healthy and beneficial, about the dual narratives that were inspired by the same condition. One, that vitiligo was a disfiguring disease that required treatment, and another that vitiligo was a beautiful condition that should be celebrated. In the end I believe that all perspectives were heard and that we all resolved to work together to improve the lives who are affected by vitiligo, regardless of their individual perspectives. I even had an opportunity to write about this in an editorial in the prestigious journal Nature ("Vitiligo’s impact is in the eye of the beholder"). I hope that we can continue this important discussion, and all learn to cooperate in a meaningful way. The vitiligo community deserves this from us!
Looking ahead, we have more research that we are excited to publish in the next year, some providing new insight into what is at the root of vitiligo, and other findings that may lead to new treatments. With your help we will recruit more scientists to our team to continue our work, and start to focus on finding a cure in addition to new treatments. We expect to start enrolling for a third clinical trial that we are participating in, and possibly more! We will celebrate World Vitiligo Day in Houston, and continue to advocate for individuals with vitiligo at a local, national, and international level. Please stay tuned to our blog and newsletters to hear about these exciting events as they unfold! Finally, thank you all for your encouragement and support for our work, it means the world to me and our team.
Happy new year!!!