Exciting News for Progressive MS Research

Hello from the ACTRIMS-ECTRIMS meeting in Boston. Today I had the honor of participating in a press conference to announce important news about the International Progressive MS Alliance. I was joined by my colleagues from around the world to share the Alliance strategies for ending progressive MS, and we also answered questions from a room full of reporters from around the world.

The Alliance announced the launch of 22 new research grants to investigators in 9 countries, who will be taking intriguing new approaches to overcome barriers to developing treatments for progressive MS. Many of the new grant recipients were at the press conference, and the atmosphere was electric!

The press conference was held by the International Progressive MS Alliance, a worldwide collaborative focused on finding solutions for people who have progressive forms of MS. I have the privilege of serving on the Scientific Steering Committee for the Alliance, which is focused on facilitating global collaboration to build research infrastructure and share knowledge, as well as increase worldwide funding capacity to drive large-scale global research initiatives. The National MS Society was one of the founding members of the Alliance, now represented by MS Societies in the United States, Canada, Italy, Australia, Spain, Denmark and the United Kingdom, and the MS International Federation.  

This press conference was the culmination of so much work by many dedicated people. (Read more about the Alliance here). The Scientific Steering Committee has identified four priorities, representing the most significant barriers to the development of treatments for progressive MS, and is focused on removing those barriers. To realize new treatments, the Alliance funds the best science with the clearest path to success, wherever it exists around the world. Through other committees, which are focused on helping drive the work through fundraising and communications, the Alliance is leveraging and fueling progress.

The Alliance received an astounding 195 applications from 22 different countries in response to this first request for applications. This really speaks to the ability of the Alliance to galvanize attention and attract strategic research activities to drive solutions for people with progressive MS. 

This first round of funding supports short-term (one to two years) innovative “pilot” studies to begin creating new knowledge and filling critical scientific infrastructure gaps. These include projects like identifying potential new treatments, identifying existing treatments being used in other related disorders for “repurposing therapies”, and understanding nerve degeneration that drives progression. Additional projects include building databanks of imaging and genetics information and biobanks of biological samples that are critically important resources that scientists need to really move the field forward.

And this is just the beginning. This fall, the Alliance plans to release a new Request for Applications that will support and stimulate international networks of research collaborations. Over five years, there’s a plan to invest €22 million – that’s about $30 million in U.S. dollars. This incredible effort will focus and leverage research that will stimulate new ideas, new research tools, and move us closer to a world free of MS.

If you want to learn more about the Alliance, its membership and research priorities, and the new research projects being launched, I encourage you to visit the website: www.ProgressiveMSAlliance.org.

Tags Progressive MS, Research      1 Appreciate this
| Reply
Bruce

Bruce Bebo, PhD

Bruce Bebo, PhD, is Executive Vice President, Research at the National MS Society, and was previously a research immunologist focusing on the influence of sex hormones on MS. He is a driven and passionate Society volunteer, successful fundraiser and advocate, fueled in part by the fact that his mother had MS.

Leave a Comment

Thanks for sharing your thoughts with the MSconnection.org community. Please note comments are moderated.

    48 Comments

  • Cindy   Sep 11, 2014 2:47 PM
    When will you start getting the word out about the successful stem cell treatment of PPMS and SPMS in Russia and Israel? For that matter how much longer do we have to wait for hospitals in the US to start offering it???
  • Avatar
    mser1986  Sep 11, 2014 2:52 PM
    I have secondary progressive MS. I was told by my neurologist that this form is not treated with any sort of medication. How true is this? I suffer from weakness, fatigue, vertigo and other issues. Is this what my life has been boiled down to? Thank you in advance.
  • Pete Wood   Sep 11, 2014 3:14 PM
    I keep reading a world free of ms do you see this happen in are life time I am 50 years of age have spms & pray everyday for a cure for ms not just for myself but for all with ms thanks in advance
  • Donna Strickland   Sep 11, 2014 3:33 PM
    I am secondary progressive....I am in my 27th year...could I be part of a study???
  • Avis Gonzalez   Sep 11, 2014 4:05 PM
    I'm 54 years old.I was diagnosed with RRMS 32 months ago.
    This has changed all my life, I'm willing to try anything to help stop this and safe others life's.
  • Avis Gonzalez   Sep 11, 2014 4:07 PM
    I'm 54 years old.I was diagnosed with RRMS 32 months ago.
    This has changed all my life, I'm willing to try anything to help stop this and safe others life's.
  • Leah Strump   Sep 11, 2014 5:17 PM
    I am 63. I have Secondary Progressive MS. Do I qualify. Been suffering for a long time. Diagnosed when 21.
  • Yvonne Krautbauer   Sep 11, 2014 5:29 PM
    My daughter has RRMS. Any of these new trials for Her type? I only see the Progressive type mentioned.
  • peg b   Sep 11, 2014 7:14 PM
    My husband had MS for 20 years and died from it in February. It's too late for him but maybe in time for others. Dr Babo, I met you at a private residence in Paradise valley, AZ about a year ago.
  • Janine Howard   Sep 11, 2014 8:03 PM
    I, 59, turning 60 next month. I was diagnosed in April 2011 with PPMS, but was told I've had it since 2003, when I was diagnosed with breast cancer and treated with chemo and radiation. I presently am just taking methotrexate and gabapentin 900 mg for pain and tramadol, as needed. Both of my feet r drooped so I wear AFO's on them. I walk assisted with a cane, walker or scooter. It was explained to me that because I've had cancer and r cancer free, stem cell replacement is not for me. Would I ever be eligible to take part in any new tests for treatment of PPMS because of my history?
  • deedench  Sep 11, 2014 8:10 PM
    I would be interested in participating in a study since I have changed from the relapsing remitting stage to the secondary progressive stage. I was diagnosed August 1992.
  • Laura Miranda   Sep 11, 2014 9:09 PM
    I am a 65 y/o female Dx. with PPMS at 59, however was told I had it for many years prior to Dx. My symptoms are heat related fatigue, mild-moderate cognitive dysfunction, short term memory dysfunction, blurred vision. I have no spinal lesions. Difficulty with decision making.
  • Bonnie D   Sep 11, 2014 9:27 PM
    How great is this!!! My husband, Jim, had MS for 42 years of our 49 year marriage. He died last September He would be so happy to know the research is progressing.
  • Bonnie D   Sep 11, 2014 9:29 PM
    How great is this!!! My husband, Jim, had MS for 42 years of our 49 year marriage. He died last September He would be so happy to know the research is progressing.
  • Bonnie D   Sep 11, 2014 9:31 PM
    How great is this!!! My husband, Jim, had MS for 42 years of our 49 year marriage. He died last September He would be so happy to know the research is progressing.
  • Bonnie D   Sep 11, 2014 9:31 PM
    How great is this!!! My husband, Jim, had MS for 42 years of our 49 year marriage. He died last September He would be so happy to know the research is progressing.
  • Bonnie D   Sep 11, 2014 9:32 PM
    How great is this!!! My husband, Jim, had MS for 42 years of our 49 year marriage. He died last September He would be so happy to know the research is progressing.
  • Tom   Sep 12, 2014 1:49 AM
    ........... stem cell treatment................
  • Donna N.   Sep 12, 2014 4:54 AM
    Our 36 y/o grandson fighting progressive MS for ten years. Please, please, let this be the key to be a normal life.
  • otto s   Sep 12, 2014 8:23 AM
    I have had ms for 11 years I am 57 years of age this illness has done nothing but cost in terms of financial n especially with relationships I hate living with this I hear all the time about promising research going on reasearchers I believe fail to understand living with this illness is difficult we need easier access to treatments n quality of life help why is this so hard to accomplish if they live with this they know what I am trying to say thank you
  • otto s   Sep 12, 2014 8:23 AM
    I have had ms for 11 years I am 57 years of age this illness has done nothing but cost in terms of financial n especially with relationships I hate living with this I hear all the time about promising research going on reasearchers I believe fail to understand living with this illness is difficult we need easier access to treatments n quality of life help why is this so hard to accomplish if they live with this they know what I am trying to say thank you
  • otto s   Sep 12, 2014 8:23 AM
    I have had ms for 11 years I am 57 years of age this illness has done nothing but cost in terms of financial n especially with relationships I hate living with this I hear all the time about promising research going on reasearchers I believe fail to understand living with this illness is difficult we need easier access to treatments n quality of life help why is this so hard to accomplish if they live with this they know what I am trying to say thank you
  • otto s   Sep 12, 2014 8:23 AM
    I have had ms for 11 years I am 57 years of age this illness has done nothing but cost in terms of financial n especially with relationships I hate living with this I hear all the time about promising research going on reasearchers I believe fail to understand living with this illness is difficult we need easier access to treatments n quality of life help why is this so hard to accomplish if they live with this they know what I am trying to say thank you
  • otto s   Sep 12, 2014 8:25 AM
    I have had ms for 11 years I am 57 years of age this illness has done nothing but cost in terms of financial n especially with relationships I hate living with this I hear all the time about promising research going on reasearchers I believe fail to understand living with this illness is difficult we need easier access to treatments n quality of life help why is this so hard to accomplish if they live with this they know what I am trying to say thank you
  • otto s   Sep 12, 2014 8:25 AM
    I have had ms for 11 years I am 57 years of age this illness has done nothing but cost in terms of financial n especially with relationships I hate living with this I hear all the time about promising research going on reasearchers I believe fail to understand living with this illness is difficult we need easier access to treatments n quality of life help why is this so hard to accomplish if they live with this they know what I am trying to say thank you
  • otto s   Sep 12, 2014 8:27 AM
    I have had ms for 11 years I am 57 years of age this illness has done nothing but cost in terms of financial n especially with relationships I hate living with this I hear all the time about promising research going on reasearchers I believe fail to understand living with this illness is difficult we need easier access to treatments n quality of life help why is this so hard to accomplish if they live with this they know what I am trying to say thank you
  • otto s   Sep 12, 2014 8:27 AM
    I have had ms for 11 years I am 57 years of age this illness has done nothing but cost in terms of financial n especially with relationships I hate living with this I hear all the time about promising research going on reasearchers I believe fail to understand living with this illness is difficult we need easier access to treatments n quality of life help why is this so hard to accomplish if they live with this they know what I am trying to say thank you
  • otto s   Sep 12, 2014 8:28 AM
    I have had ms for 11 years I am 57 years of age this illness has done nothing but cost in terms of financial n especially with relationships I hate living with this I hear all the time about promising research going on reasearchers I believe fail to understand living with this illness is difficult we need easier access to treatments n quality of life help why is this so hard to accomplish if they live with this they know what I am trying to say thank you
  • capitolcarol  Sep 12, 2014 9:10 AM
    I am 64. I was wrongly diagnosed, but I think I have had secondary progessive MS since I was 59. I am on the Tysbari and Ampyra therapy, but suffer greatly from pain. I drop things all the time, have memory problems, trouble speaking, I can barely walk with a cane and then my thighs ache. I would be anxious to hear of any research that could help all of us MS sufferers.
  • Brigid   Sep 12, 2014 12:57 PM
    I have primary progressive ms, I'm a full time wheelchair user for the last 4 yrs. I have been told by my neurologist that there is no medication available for this. I live in Ireland, I would be willing to take part in trials but have heard absolutely nothing about ppms trials.
  • Sue Boiarsky   Sep 12, 2014 1:33 PM
    I am 72 yo and was diagnosed in 1996 w/RRMS. I could not take any already proven drugs because of allergic reactions to all of them. I am now diagnosed w/SPMS and am in a wheelchair full time. I am SO glad to learn that there will finally be research being done to help those of us who are now in the advanced stages of this disease. I know I won't live to see some relief from my MS, but we need to keep strong and just know that something is finally being done for us.
  • Amie Easley   Sep 12, 2014 8:06 PM
    I am 37 yrs old and have been dx for 14 yrs. I had RRMS until I progressed to SPMS after the birth of my son approx 3 yrs ago. I am now in a wheelchair full time and have limited use of arms and legs. My son wishes that I can walk again. None of the typical MS drugs work anymore. I would love to hear about potential treatments for progressive MS. This is a great step in finding a cure!!
  • Amie Easley   Sep 12, 2014 8:08 PM
    I am 37 yrs old and have been dx for 14 yrs. I had RRMS until I progressed to SPMS after the birth of my son approx 3 yrs ago. I am now in a wheelchair full time and have limited use of arms and legs. My son wishes that I can walk again. None of the typical MS drugs work anymore. I would love to hear about potential treatments for progressive MS. This is a great step in finding a cure!!
  • carol   Sep 12, 2014 8:09 PM
    I am 59--I have just been diagnosed with ms--not labeled-- my 2 brothers have/had ms--one has passed after about 20 years of ms---the other one has had ms for over 20 years. would you be interested in studying us?
  • carol   Sep 12, 2014 8:09 PM
    I am 59--I have just been diagnosed with ms--not labeled-- my 2 brothers have/had ms--one has passed after about 20 years of ms---the other one has had ms for over 20 years. would you be interested in studying us?
  • Pamella Metten   Sep 12, 2014 9:26 PM
    I have had primary progressive multiple sclerosis since 2007. I am 56 years old. My first neurologist said there is not a treatment at this time. My next neurologist suggested Ampyra and Gilenya. The Ampyra did not help my walking. There were no measurable results with the Gilenya so after 2 years I was told to discontinue. Now my neurologist wants to reclassify me to relapsing remitting so he can put me on Tecfidera. I am excited to hear that there will now be more research for primary progressive multiple sclerosis. Where do I sign up!
  • Lenny   Sep 12, 2014 10:28 PM
    I have had MS for over 20 year, had a bad relapse 2 years ago entered into a trial program to slow down my MS. I was in 48 weeks into a 3 year program. I had a bad reaction to the trial drug and it took me 9 months to fully recover from the drug. They put me on a pill form (another test drug) shortly after i received and email from the FDA send me a notice of a potential risk associated with the drug i was on. I took the information to my MS doctor who said not to worry i would be like 1 in a 1000 that would possibility i would develop the issue. Needless to say i did start having major chest pain, so i did the best thing for my condition. I stopped all drugs and brought myself slowly off medication completely. Its been 10 months drug free and i feel like i got some of my life back. Granted this is not for everyone but for me right now I'll take my chances.
  • Doug R.   Sep 13, 2014 1:14 PM
    Here's to hoping the good souls conducting MS research can find treatments to stop the disease. My dear friend , Brenda, has had the disease for twenty years. Her condition has turned into SPMS. She's 40 & is a grandma. I would like her to see the grandchild grow up. So, here's to the researchers finding a cure to help all the wonderful souls afflicted w/ MS.
  • jerry baerg   Sep 13, 2014 1:41 PM
    I'm 55 in wheelchair ppms with 5 years to go before I give up I'm not expectomg any changes in the medical protocol but u can dream about it
  • Lori R.   Sep 14, 2014 1:27 PM
    I am 58 years old and was diagnosed with PPMS 7 yrs ago. I had symptoms for years prior to that. I do not and have not taken any drugs because I don't feel the risk/reward is worth it. My first cousin has SPMS. I was told that I had an "unusual gene study" done by a genealogist here in NYC at Mount Sinai- not sure exactly what that means, but was told not to be concerned at this time.
    I would be happy to be a participant in anything that can help to find a cure.
  • TERRY HELLER   Sep 19, 2014 7:16 AM
    Please help us........ we have SP. I
  • Fatima   Sep 24, 2014 3:46 PM
    Hi my husband has MS and has been suffering and now cannot work. He is 43 years old and I have 3 small kids. I would love it if he can be part of this new harmone treatment for the sake of my kids. Nothing else is working. Please contact me Dr.Bruce Bebo. I am heart broken.He was the hardest working nicest man who never said no to anyone. Hope there is a cure in th the near future.
  • Betti   Oct 3, 2014 10:46 AM
    My youngest sister has had progressive ms for the past 25 years and has been in a nursing home for twelve of those years. She is interested in participating in the injection/stem cell therapy.
  • Celeste   Oct 11, 2014 9:16 AM
    I was diagnosed as having (most likely) PPMS in December 2013. However, I have had symptoms for about 5 years. I drop things frequently, have short term memory loss, vertigo, balance problems, my forearms have tingling in the evening, and foot drop. I am not in a wheelchair, nor walk with any assistive devices...yet. I am currently taking baclofen and gabapentin for some of my symptoms, but I was told that there is no medication to stop the progression. I would like to really check into the stem cell therapy.
  • Steve johns   Oct 26, 2014 7:30 PM
    Drug regulation reform.

    Our system for drug evaluation badly needs reassessment and reform. The system originated because of a need to protect people from snake oil salesmen but has been debased into a system for protecting vested monetary interests at the expense of the people it should be protecting.
    I have PPMS and have been involved in a phase 3 trial of Fingolimod for the last 3 years. As you know it was approved for other types of MS in about 2008 but, as PPMS had been kept out of the previous trials, not for Primary Progressive. This has of course only removed 10% of the ‘market’ (read people who need it) and has allowed Novartis to wait a few years then run these trials and then claim a ‘new application’ and so extend their patent by about 8 years allowing them to continue to charge $3000 for 28 day’s supply.
    This highlights 2 issues. Firstly the drug has been shown to slow the progression of the disease. There would not be a phase 3 trial at all if no effect had been observed. In PPMS the average progression from diagnosis to death is about 17 years and there are no other treatments for the progression of this disease so with holding this drug from this group for 8 years is a significant sentence for these people and a serious abuse of human rights.
    Secondly the use/abuse of the system to extend the life of their patent and so allow the company to sell the drug to 90% of their market for 8 years and then start the clock again on the patent for 100% of the market at a price that is determined by how much can be screwed out of government subsidies (they couldn’t sell it for this amount otherwise) is a serious rort and amounts to fraudulently obtaining tax payers money.

    This is technically not criminal because it is not illegal but it is certainly not ethical or morally justifiable. It has denied access to this drug for the people (yes PEOPLE, patients are people) who could have benefitted from this drug for 8 years, during which time many have suffered terribly, and all in the name of company profits and, possibly, jobs for people conducting the new round of unnecessary trials. This corruption, and it definitely is corruption, is the main reason why reform of the system is so badly needed.
    Another part of the system that needs reform is the trial process itself. The double blinded, placebo controlled trial is the gold standard for identifying and quantifying effects but is not necessary in many instances for approving drugs and only serves to make trials far more expensive than necessary. Such a trial is unarguably the most accurate but what is needed is the most appropriate method of assessment. This will be the type of trial that gives the most relevant information to what the trial is assessing. If a drug has been shown to be safe and to have an effect in phase 1 and 2 trials and to, for example, slow the progression of a disease by approximately 70%, then a phase 3 trial should be unnecessary or could be simplified, speeded up and made more effective. The placebo control group could be eliminated entirely because there will always be a placebo effect in some people when the drug is available on prescription and the control is the entire medical history of the disease to date. This is not as close to an exact comparison as with a placebo control group but even such a control group is not an exact comparison. In this instance though this would be irrelevant because the placebo effect will not be 20% and the difference between ‘approximately 70%’ and 67.32 percent makes no difference to anything. You could treble the size of the trial and perhaps calculate the results out to 67.3897348% and this would be far more accurate but gives no additional useful information.
    In this instance then if all participants in the trial were given the active drug, as opposed to half receiving a placebo, then the size of the trial is doubled and this in itself tends to even out the effects of any aberrant individual reaction.
    It is also far more ethical to give all participants the active drug than to deceive half the participants to observe their decline and suffering to be able to get a more accurate assessment of the last decimal place for the percentage effect. In fact when you know that the effectiveness is, say, 70% then the use of a placebo this way is immoral.
  • Geraldine   Nov 19, 2014 3:08 PM
    my husband was diagnosed with ms jan 2011, when he was suffering with double vision, he had it for 6/7 months, all this time just thinking it was his eyes adjusting to night work which he had started 6/7 months previous. but an eye test lead to an MRI and he as diagnosed with MS. jan 2013 all the
    symptoms possible arrived and now he is very poorly with ppms, all trails ive checked out seem to want you to have an edss of 6.5 , my husband is 7 ish. He is 42 and a father of 4.
  • Avatar
    Constance56  Dec 4, 2014 4:15 PM
    I have Primary Progressive MS and had to retire early from teaching. I don't get around easily but would like to know what I can do. My family participates in Walk MS and has donated generous amounts. I'm on Baclofen only and follow up on new research and healthy eating blogs but make little contact with people these days. I was pleased to read through this site. We have to stop expecting the big pharmaceuticals to help us.
  • John Kudrick   Jun 10, 2015 8:57 PM
    I was wondering when we were going to get some help .I started to think that us people with ppms would be left out in the cold