Oceans of Hope – It’s much more than a catchy tag line, it is a metaphor for so much last month in Boston. Oceans of Hope (the vessel circumnavigating the globe crewed by MS patients www.sailingsclerosis.com) was the deliverer of both hope for what people living with MS can accomplish, and MS Cure Fund’s founder, Susan Strachan, who sailed as part of the crew from Bermuda to Boston.
As wonderful and empowering as that was, it was the oceans of hope represented by over 9000 MS researchers, neurologists, clinicians, pharmacology professionals and “relentless advocates” (that would be us, MS Cure Fund and others) who all converged on the John B. Hynes Veterans Memorial Convention Center in Boston, September 10-13, 2014 for MS Boston 2014.
MS Boston 2014 (msboston2014.org) was the largest convergence of MS research and development in history. MS Cure Fund was very excited to have this historic event in our home town. Staff from MS Cure Fund attended research presentations, staffed the MS Cure Fund exhibit in the research presentation hall, and discussed advances with neurologists from The Netherlands to Panama and everywhere in between.
At the risk of oversimplification, the most repeated message of the entire conference was – THINK! Think about your MS; think about your symptoms; think about your medication(s); think about your quality of life; then talk about it.
Many studies were presented that dealt with more accurately recognizing MS progression. This is critical research aimed at identifying when and why MS progression occurs and how to treat it. For patients, it boiled down to being committed to tracking and logging your MS symptoms as often as you notice them to share with your neurologist.
An equal number of presentations dealt with myelin repair (remyelination). Use of stem cells from bone marrow, placentas, and more explored the possibilities of teaching our bodies to repair themselves. Some dealt with the delivery of young myelin compounds to the targeted areas of scarring (sclerosis) to re-wrap the nerves and restore function. While all very promising, most are still at the phase 1 trial stage. Hopeful though, recognizing the exponential growth in stem cell research, the future looks very promising.
The majority of the work presented, and the discussions in the halls, was about what disease modifying therapy (DMT) patients should take. Countless presentations and research abstracts dealt with head to head comparisons between today’s DMT’s. While the delivery methods of DMT’s are always a prime consideration to patients, it is how well they work and why that really got the buzz going. Some DMT’s strengthen the blood brain barrier, making it harder for affected t-cells to make the pass into nerve tissue. Others directly reduce the inflammation caused by affected t-cells, effectively mitigating the damaging affect they have on nerves and myelin. Still others are crossovers from other autoimmune disease treatments. And finally, chemo like drugs were discussed that can wipe out whole spectrums of t-cells, rendering patients free of MS progression, but susceptible to all kinds of potentially dangerous conditions as a result of a compromised immune system.
THINK – the key to all of this is to continuously think about how you are REALLY doing. If you are uncertain that your DMT is working effectively, ask your neurologist, get to an MS event were you can ask other neurologists and representatives about your DMT and what other options may be good to consider. TALK – be honest with you neurologist and caregiver about what you are feeling. No MS patient wants to admit that they are experiencing a possible progression, breakthrough (when a DMT is no longer effective), or exacerbation. It’s scary. Talking about it gives you and your care team the opportunity to do something about it.
The best part of MS Boston 2014 was hope. As Oceans of Hope delivered MS Cure Fund’s founder safely to Boston, hope was the primary delivery of the 9000 plus MS professionals that came together with one common cause, cure MS. We were honored to be a small part of an incredible event. We are committed to bringing you more of what transpired at MS Boston 2014 and will follow up with you as progress and reports continue to come forward. As MS Cure Fund’s tag line states… MS Boston 2014 delivered – STRENGTH FOR TODAY . . . HOPE FOR TOMORROW!