Frequently Asked Questions about the Accelerated Cure Project

• What does your organization have to offer me?
  Reading this page is a good way to learn about our organization, but to learn what we have to offer you directly, you should start here.


• What is the Boston Cure Project?
  The Boston Cure Project for Multiple Sclerosis is a national nonprofit dedicated to curing MS by determining its causes. Founded in 2001 it began formally branching out nationally in 2005 under the umbrella name Accelerated Cure Project for MS, with the Boston Cure Project as the national headquarters and New England Affiliate.


• You mean nobody is already doing this?
  Surprisingly, no. Creating a large collection of samples from people with MS and matched controls in a manner that they can be used by people in multiple disciplines along with corresponding medical and epidemiological data is an obviously useful thing. Nobody disagrees with this. So why isn't it being done? There are 3 main reasons: 1) It's expensive. Most grants to researchers are not nearly big enough to tackle a problem like this; 2) It's administratively difficult. Researchers need to do research. Spending lots of time getting approval, managing the paperwork involved, negotiating contracts is not part of what they can or want to do; 3) It isn't publishable. Researchers need to publish results. Creating the tools usually isn't worthy of a publication. So that's why the Accelerated Cure Project (along with its affiliates) was formed. To create the tools necessary to allow the researchers to more rapidly determine the causes of MS.


• How are you different from other MS organizations?
  Organizations such as the National MS Society, MS Foundation, and MS Association of America are primarily focused on support and services for people with MS. The National MS Society spends 80% of its money on these types of activities. The remaining 20% is spent on research of all varieties such as basic science, animal studies, natural history, pathogenesis, etc. Most of this research is investigator initiated, meaning the ideas for the research come from the researcher. The NIH funds similar programs at a level 3-4 times that of the National MS Society. There are a number of other smaller organizations funding particular researchers such as the Race to Erase MS, the Myelin Repair Foundation, the Myelin Project, and Cure MS Now.
  
  The Accelerated Cure Project is focused on determining the causes of MS. To do this we are creating tools to be used by researchers to accelerate this inquiry. We do not get involved in the support and services angle, and we currently do not fund researchers. We intend to give them access to the samples collected as opposed to money to conduct studies. This allows us to leverage the work of other organizations, while providing a significant value that isn't available elsewhere.


• Doesn't cure mean repairing the damage?
  The word "cure" has many connotations. A cure can come in the form of prevention, by halting progression, or by reversing damage. We believe the two most important angles to address are the cause (so we can stop it at the source) and the repair of damaged nerves and myelin. The work on repair is useful to many other disorders and is being worked on by quite a few labs. We felt that the search for the cause was underserved and decided to put our energies in that direction. Even if we could repair the nerves and myelin, without stopping the disease itself they may just be redamaged again.


• How is your sample repository different than other repositories?
  There are other sample repositories out there. Few are specific to MS. Few have a large number of samples. Many do not have sufficient medical records to back up the diagnosis of the condition being studied. Rarely is any epidemiological data available on the donors. Many are collected for a single purpose and are not useful to people in another discipline (e.g. collected for genetics, useless for toxicology). Not all repositories are shared outside of the labs that created them.
  
  Our goal is to address all of these issues and also create a resource where the data derived from studying the samples is returned to the database and shared with future researchers using the samples, thus increasing the value of the collection with each study done.


• Are you working with the National MS Society?
  While we do not have a formal relationship with them, we are regularly in touch with the New England Chapter, keeping them informed of what we are up to and looking for ways we can help each other out. We are otherwise completely distinct entities.


• Do you do research on animals?
  We do not currently support any non-human animal research. We are not opposed to such research when conducted properly; and we may support animal research in the future.

  We assume you are asking about non-human animals (humans are animals, too). We strongly favor research that is human-based, as MS is a human disease, but should a better animal model of MS be developed we would be open to using it.

  Currently our efforts are entirely directed at collecting blood and data from human subjects and the research done to analyze them.

Frequently Asked Questions about MS

• What is MS?
  Multiple Sclerosis, or MS, is a chronic demyelinating disease of the central nervous system. "Chronic" means that once you get the disease, it doesn't go away. In the case of MS, it is often progressive (gets worse) also. Myelin is the coating on nerves that helps them conduct and send their signals. In MS this coating is destroyed somehow, resulting in the disability associated with the disease. The central nervous system is comprised of the brain and spinal cord. The damage that occurs in MS seems to only affect this area of the body and not the peripheral nervous system.


• What are the symptoms of MS?
  Because MS affects the central nervous system, the symptoms are often far ranging. Common symptoms involve sensation (numbness, tingling, pain), coordination (balance, weakness, spasticity, disability), vision (optic neuritis, blindness), cognition (memory loss, thinking difficulty, poor attention span), mood (depression, fatigue, emotional lability) and other areas (bladder/bowel control, sexual dysfunction).


• What causes MS?
  The cause of MS is not known. It is currently believed that MS is not a single disease, but rather a family of disease that have a similar endpoint. There may be different causes for different people. There is strong evidence to indicate that MS has a genetic component, but it is not sufficient to cause the disease on its own. Some environmental trigger is required.


• Who gets MS?
  Approximately 400,000 people in the US have MS and an estimated 2 million people world-wide. About 10,000 new cases are diagnosed each year. MS is found primarily in people of northern European descent. Twice as many women as men get MS. The majority of cases are diagnosed between the ages of 20 and 40.


• What is the prognosis?
  MS is a difficult disease because it is so unpredictable. No two people seem to have the same course of progression and there is little that can be predicted as to the course an individual will take. MS is very rarely fatal, and people with MS will most likely live out their natural lives.


• What can be done?
  There is currently no cure for MS. There are 5 FDA approved therapies that seem to affect the progression of MS (Avonex, Betaseron, Copaxone, Rebif, and Novantrone), but none of them stop the progression of the disease. In addition, there are many drugs and therapies that treat the various symptoms to improve quality of life. Many people find that they experience an improvement in their symptoms just by starting to eat properly and exercise.


• Can my kids get it? Did I get it from my parents?
  While there appears to be a genetic component to MS, it is not directly inheritable. About 1 in 1000 (0.1%) people in the general population have MS. First degree relatives (parent, sibling, child) of someone with MS have a twenty-fold increase in prevalence to about 2%. Studies with identical twins show that if one twin has MS, there is approximately a 25% chance the other will. These figures imply that if you are more genetically similar to someone with MS, you have a higher chance of having MS yourself. But the fact that one identical twin can develop MS while the other doesn't indicates that genetics don't completely determining the risk of MS. Apparently, something in the environment is needed to trigger the disease. Researchers are now assuming that MS is caused by a set of multiple genes and an environmental trigger.


• It seems like more than 400,000 people have MS, is this true?
  It does seem like that, doesn't it? In the US, we really don't know the answer. The CDC (or any other organization) does not require the diagnosis of MS to be reported. Thus all our figures are estimates. Once you, or a family member, is diagnosed with MS you will suddenly find that you know a number of other people who have MS or know someone with it. This adds to the perception that there are more people than you would have expected with MS. However, in other countries (Canada, UK, Norway, etc.) that have National Health Services it is possible to get a good idea of how many people are diagnosed with (or at least getting treated for) MS. In almost all of these countries the prevalence is around 1 in 1000. Montel Williams has had Gallup and Zogby polls conducted to determine how many people have MS. These polls indicate a much higher prevalence, but they don't ascertain the diagnosis and go by self-reporting alone. The answer is probably somewhere in between. MS is a disease that often goes undiagnosed and untreated, so there are most likely many people who have it, but don't know.

Frequently Asked, But Still Unanswered, Questions About MS

Although MS was recognized as a disease 135 years ago and has been studied intensively by doctors and scientists ever since, it is remarkable how little we know about even its most basic features.

Below is our list of "Frequently Asked, But Still Unanswered Questions About MS." There are hypotheses and perhaps partial answers for each of these very fundamental questions -- but none have yet been truly answered.

• What causes MS?
• If MS is caused by genetic and/or environmental factors, how could two genetically identical twins who grew up in the same house together, attended the same schools, were exposed to the same germs, etc. be discordant?
• What causes an exacerbation of symptoms? What makes it go into remission?
• Why do the types of symptoms experienced vary from person to person, or even from relapse to relapse in the same person?
• What is the connection of oligoclonal bands in the cebrospinal fluid of many people with MS to the disease?
• What causes the disruption of the blood-brain barrier?
• What causes a lesion to start forming in a certain spot?
• What makes it stop growing?
• Why doesn't MS affect the peripheral nervous system?
• Why do some people start off with the relapsing-remitting form of MS, while others are progressive from the very beginning?
• What makes someone go from relapsing-remitting to secondary progressive?
• What destroys the myelin in MS? Is this the primary injury in MS?
• How do axons get damaged?
• What involvement does gray matter have in the disease?
• Why do twice as many women as men get MS?
• What causes the inflammatory response, can it really be autoimmune?
• Why does MS typically strike people as young adults? Why not as children or as middle-aged or elderly adults?