Last week, the Myelin Repair Foundation held our 5th annual research meeting in the San Francisco Bay Area, where our researchers presented their results of the previous year.
While we hold regular phone conferences with our labs at which our scientists share results and create new leads, our annual meeting is one of three in-person meetings a year where they can develop the camaraderie that makes them such an effective team.
The theme of our fifth annual meeting was “Promises Made, Promises Kept,” and many of the attendees said it was the best meeting we’ve had yet. We emphasized the importance of collaboration by treating our scientists to a Treasure Hunt in San Francisco. We also reminded them of the biggest reason for their work by featuring a panel of MRF supporters that are also MS patients, thus putting human faces and voices to the MS problems they work to solve in their labs every day.
This year’s meeting was breathtaking: one of our largest meetings yet — over 60 scientists, staff and volunteers attended. Each lab presented their results and there were 21 posters presented by graduate students and post-docs on the team.
Day One:
We kicked off the meeting by having the researchers re-introduce themselves for the benefit of any new lab members: what projects they are working on, why they got interested in neuroscience, and why their labs had chosen to be part of the Myelin Repair Foundation. Next, we put the graduate students and post-docs on a bus to San Francisco to engage in some low-tech (but highly-fun) collaboration in an MRF-style treasure hunt. Our teams took their riddle-solving and clue-searching skills to the streets and alleyways of the Financial District and Chinatown. Great job everyone!
Day Two:
On the second day our scientists shared their latest research from their respective laboratories by presenting their results to the Scientific Advisory Board (SAB) and Drug Discovery Advisory Group (DDAG). These advisory groups gave feedback on the presentations and helped the MRF management team make strategic decisions on how to best move forward with our research plan.
Day Three:
On the final day, we brought in MS patients that are supporters of the MRF to speak about their experience living with multiple sclerosis, how it has impacted their lives, what gives them hope, and what really matters to them. Charles Weinbar spoke on his interest in outdoor sports and how he’s coped with it by coming up with ingenious ways to participate. But he still hopes to walk his daughters down the aisle.
Debbie Nolan Holland talked about the way in which having a child changed her approach to the disease.
Gali Hagel recounted her traumatizing experience getting diagnosed with MS, and how difficult it was to communicate with neurologists and the uncertainty of planning for her future.
Rachel Quilter described her difficulties with MS but also demonstrated her perseverance and positive outlook, as many of you are aware of after watching her videos.
Anita Zaremba, a scientist from Dr. Robert Miller’s lab at Case Western Reserve remarked,
“I was impressed with the spirit that all of the patients showed: Charles adaptive skiing and biking, Rachel’s travels and stories show incredible chutzpah, even the patients who don’t show external symtoms are still bravely trying to manage their versions of the disease. I felt very honored that they trust us to try, and believe in our work, because, from where I’m sitting, this is a very complex disease and its taking much longer than I would like to find some answers, even though I know we are making amazing progress through our collaborations.”
Sarah Blink Polakow, a scientist from Dr. Stephen Miller’s lab at Northwestern had never met an MS patient before this conference. She commented about the panel, “It brought an emotional element that was really positive…because I do so much work that is frustrating and you feel like ‘why am I doing this?’” She is also pleased that her work with the MRF is so patient-focused because now when people ask her what she is working on instead of feeling like she’s just working towards an understanding of MS on a minute-level, she can now respond that she is working towards a treatment because of our research model.
Thank you to all the MRF scientists for doing what you do best and thanks to the MS patients who helped remind them of the most important reasons for their research. We all had a great time and I know you are very motivated to go back and discover myelin repair drug targets!
keep it up
Comment by jose luis — October 4, 2009 @ 11:03 am
This targets a needed place for treatment of MS. The more collaborations at all levels, the better the outcome. Where there are numbers, there is action.
Vance High MS,MEd
Comment by Vance High — October 4, 2009 @ 11:47 am
Thank you so much for trying so hard. I am weakening..so please please keep trying.
Comment by Marina Fachini — October 4, 2009 @ 1:12 pm
Dear MRF researchers,
Thanks loads for your work. As a former life science researcher, myself, I know that progress comes in fits and starts. However, you have a great organization and so many fans who are so grateful for you efforts.
From an old Irish blessing, …may the road rise to meet you, and the wind be always at your back…
Comment by Joan Hyde — October 4, 2009 @ 2:23 pm
Keep your intake of ORGANIC vegetable up. If you can juice fresh carrot/spinich (celery/carrot is my favorite) for nerves or any combination and drink that juice – you will nourish your body and your nervous system with live fresh organic vital minerals/vitamins and enzymes. I bought a NORWALK JUICER – and I juice 2 1/2 to 3 gallons once a week, (use mason jars)- Don’t eat JUNK foods. Stay away from processed packaged type foods and canned foods. They will aid towards progression. Remeber GARBAGGE IN GARBAGE OUT
Comment by Barbara Lang — October 4, 2009 @ 4:16 pm
Words cannot express my appreciation for the research that your group(s) is conducting. Stay focused and may God bless your endeavors.
Comment by Linda Frankum — October 4, 2009 @ 5:19 pm
I had not realized that this wonderful group of scientists existed. Thank you all so much for all you’re doing. I know it is PAINSTAKING work; but when you find that answer to the puzzle, many of us will be lined up to kiss your feet!!!
My many prayers are with you ALL. God bless!
Comment by Cathy Schwaegler — October 4, 2009 @ 6:42 pm
never heard of you,but as the rest of suferers I’m greatful for your work and wil suply any answers to your questions if need be
Comment by davslav — October 4, 2009 @ 8:56 pm
I’m a California girl living in Scotland with MS. I’m impressed with what you’re doing and wish they would do something like that here. You should send info to David McNiven director of the MS Society Scotland.
Comment by Nancy P — October 5, 2009 @ 12:52 am
I have had MS for about 30 years to. I also was told a cure was coming soon. Thank You for everything you are doing.
From RI
Comment by Lora S — October 5, 2009 @ 8:06 am
I thought I read that the MRF was partnering with Opexa to get Tovaxin phase III trials going. I’ve been reading blogs by people who were in the IIB trial, with excellant results. Also, what about hemilith therapy and the Nottingham study?
Comment by janis p — October 5, 2009 @ 9:49 am
After reading all these great comments, it gives me great hope for finding a cure for the near future. Just hearing the word “cure” makes me so happy!!! The thought of leading a normal life means so much. I’m so sick and tired of fighting a never ending battle that you have no chance in winning. But now with the new advances in medications, I finally feel like we are winning the fight against MS!!! YES!!YES!! YES!!! lol
Comment by bernie scanlon — October 6, 2009 @ 12:05 am
Nancy, We would love to be connected to David McNiven. Do you know how we could reach him? Please email us at info@myelinrepair.org
Cheers,
Justine
Comment by Justine Lam — October 6, 2009 @ 10:07 am
Thank you Cathy for your kind words to our scientists!
Comment by Justine Lam — October 6, 2009 @ 10:08 am
I have had MS for over half my life! My father reassured me, 42 years ago, not to worry, by the time I get it there will be a cure. since he had two cousins with it, he assumed it was genetically related.
Until I took Copaxone, I thought all I needed was some myln repair, but aftertaking Copaxone, my walking worsened. So now I need more mylen repair. Thank you so much for your work. Everything I love to do involves walking; ransportation, gardening, exercise. GO MFR’s!!!
Comment by Vicki Mercer — October 8, 2009 @ 10:32 am
Janis, I’ve asked Rusty Bromley, our COO, your questions. I will post his answer once he gets back to me.
Comment by Justine Lam — October 8, 2009 @ 11:21 am
I thank you so much MFR, I have hope now just knowing that a team of brilliant doctors has taken on the task of finding a cure for MS or just to find a drug to repair the myelin.
I am a grandmother and I just want to be able to do the simple things with the grandchildren such as go to the park to toss a baseball for the grandson, an outing at the beach or just a little walk. Just simple stuff.
Comment by Bettie Marshall — October 9, 2009 @ 5:40 pm
MRF Scientists, Staff and Supporters are ROCK STARS!
Thanks for all you do. Can’t wait til you repair MY Myelin!
Comment by Courtney Carver — October 10, 2009 @ 9:08 am
Good work and thanks for your help.
I did notice, however, in the picture that all were standing and no one used any aids. Amazing.
I have PPMS and have used a rollator for 5 years and headed for a wheelchair.
Hope you get those drugs approved soon.
Comment by Martha Greenlee — October 14, 2009 @ 11:39 am