We need people with TM, ADEM, NMO and ON to enroll in the Accelerated Cure Project Study!

For more than a decade I have talked to hundreds of people about their experiences with TM, ADEM and NMO.  There is no question that concerns people more than how they got their condition.  For most people, their physician is unable to provide them with this answer.  This is a disconcerting and frustrating situation and they are left feeling confused, disappointed and frightened by the absence of a medical explanation as to the causes of their condition. 

Much has been learned about TM in the past eight years, but there remain so many unanswered and critical questions.  What caused the immune system to become dysfunctional?  Did genetic factors play a role in this process?  Are there environmental factors involved, and if so, what factors could be implicated in triggering the dysfunction? 

After decades of unanswered questions and the lack of resources to delve into a comprehensive study, we finally have an incredible opportunity to initiate research to address these critical issues.  The Accelerated Cure Project has provided researchers with the resources they will need to focus on these most basic and crucial questions about the causes of MS, TM, ADEM, NMO and ON.  

People have been enrolling in the ACP study over the past year.  Thus far, 303 subjects have contributed blood samples and have filled out the questionnaire.  This is the current breakdown of subjects by disorder:

84 Controls
4 CIS (clinically isolated syndromes)
204 MS
2 NMO
1 ON
8 TM

No one with ADEM has enrolled in the ACP study.  Only eight people with TM have enrolled in the study.  The interesting and amazing aspect of this for me is that when I am talking to almost everyone on the phone, there is often apalpable and intense frustration and anxiety that surrounds the medical community not understanding the most basic questions about what happened to their bodies.  Some people have an extremely difficult time “letting go” of the notion that they might not ever get this critical question answered.  If I told them during our conversations that they could actually do something to contribute to finding this answer and it wouldn’t cost them any more than their time and a blood draw, almost everyone would jump at the chance to make that difference.  We finally have this opportunity to personally contribute to finding the answer to this most basic question – why did this happen to your body?  I know that you want that answer.  I am pleading with you to help us find it!

Please read Jana’s recruiting article.  She provides details about the project, as well as contact information for each of the study centers.  If you live in Baltimore, Boston, Atlanta, Dallas, New York, or Phoenix, or if you live within driving distance of one of these cities, please get in touch with the appropriate study coordinator identified in Jana’s article.  We have hundreds of members within driving distance of these centers who have TM, ADEM and NMO.  These are amazingly complex disorders; there is likely a great deal of variability between these disorders and within each of these disorders.  As is the case with MS, we will need large numbers of people reflected in the studies in order to have a chance to understand the causes of TM, ADEM, NMO, and ON.

The Accelerated Cure Project has worked very hard to receive approval to include children in the repository.  This is critically important because of the large numbers of children who get TM, ADEM and NMO.  The Study Centers are working on this process, but not all of the centers have received local approvals.  Please ask the study center coordinator when you call, if they are now enrolling children in the ACP study.  It is important that we have as many children as possible represented in the study.

The Accelerated Cure Project is beginning the process of initiating studies from the repository.  We need people with ADEM, NMO, ON and TM to enroll in this program as soon as possible.  It will not cost you a penny; it will only cost you some time.  Please make this important effort to help us and please make this effort to help yourselves!