ADEM Study seeking participants

The Transverse Myelitis Association (TMA) has kindly contacted us to share information on a current ADEM Study which is seeking participants. Thank you for sharing, Sandy Siegel!
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ACP ADEM Recruiting Message:

If you live in or near to Phoenix, AZ, Boston, MA, Worcester, MA, Baltimore, MD, New York, NY, Atlanta, GA, Columbus, OH, Aurora, CO, or Dallas, TX, we need your help! If you are going to be traveling to one of these cities in the future, we also need your help.

I am writing to you because you have identified yourself (or a family member) as having ADEM when you filled out your TMA membership form or you have joined the TMA ADEM Support Network. As many of you are aware, the TMA is an active participant and supporter of the Accelerated Cure Project. The TMA is represented on the ACP Scientific Oversight Committee, and we regularly provide financial resources to ACP to support the enrollment of people with TM, ADEM, NMO and ON into the repository. The fundamental goal of ACP is to find the causes of ADEM, MS, NMO, ON and TM. Medical science will not be able to find a cure for these diseases until they understand what causes each of them. Determining the cause of these disorders also involves being able to accurately and definitively diagnose each of these disorders. Being able to distinguish these disorders from each other is so important, because some of them require long-term therapies, and the therapies are very different depending upon the diagnosis.

Currently, we have only 13 people with ADEM enrolled in the ACP repository. If we are going to get good research done on ADEM, we are going to need a much larger number of people enrolled. ADEM is rare – you can’t count on someone else to do this for you. You hold part of the answer to these most fundamental and critical issues … what happened to you and why? Please help us to find the answers.

If you need a little more motivation, maybe this will help: One of the scientific teams using the ACP repository needs samples from people with ADEM right now! This team has started a company to develop tests that will diagnose diseases and predict their course. They are currently looking at molecules in the blood of people with MS, ADEM, NMO, and ON to see how these diseases are alike and different. Your participation in the repository will help this team carry out its research, providing new insights into the biology of ADEM, and will help other scientists in the future also.

If you can enroll in the ACP repository, please get in touch with one of the study coordinators listed below to make an appointment. Enrolling involves filling out a questionnaire and doing a blood draw. Your information will be handled confidentially. Some of the centers will accept children, while others will not, so please check the center closest to you.

Thank you for your willingness to get involved!


Repository Collection Sites

Barrow Neurological Institute
500 W. Thomas Road, Suite 300
Phoenix, AZ 85013
Principal investigator: Denise Campagnolo, MD Study coordinator: Breanna Bullock Study coordinator phone: (602)406-6211 acp-study-barrow0807@acceleratedcure.org

Beth Israel Deaconess Medical Center
Multiple Sclerosis Center
330 Brookline Ave KS 211
Boston, MA 02215
Principal investigator: R. Phillip Kinkel, MD Study coordinator: Sarah Konkel Study coordinator phone: (617)667-3726 acp-study-director0807@acceleratedcure.org

Johns Hopkins School of Medicine
Department of Neurology
600 North Wolfe Street Pathology #627
Baltimore, MD 21287
Principal investigator: Arun Venkatesan, MD Study coordinator: Jana Goins Study coordinator phone: (410)502-6160 acp-study-hopkins0807@acceleratedcure.org

Multiple Sclerosis Research Center of New York
521 West 57th Street, 4th Floor
New York, New York 10019
Principal investigator: Saud Sadiq, MD
Study coordinator: Lauren Puccio
Study coordinator phone: (212)265-8070
acp-study-msrcny0807@acceleratedcure.org

Shepherd Center, Inc.
2020 Peachtree Road NW
Atlanta, GA 30309
Principal investigator: Benjamin Thrower, MD Study coordinator: Elizabeth Iski Study coordinator phone: (404)350-3116 acp-study-shepherd0807@acceleratedcure.org

The Ohio State University Medical Center Multiple Sclerosis Center
1654 Upham Drive, 445 Means Hall
Columbus, OH 43210
Principal investigator: Michael Racke, MD Study coordinator: Lisa Hafer Study coordinator phone: (614)293-7877 acp-study-director0807@acceleratedcure.org

Anschutz Medical Campus, University of Colorado Rocky Mountain MS Center Aurora, Colorado 80045 Principal investigator: Tim Vollmer, MD Study coordinator: Sydni Edwards Study coordinator phone: (303)724-2197 acp-study-ucdenver0807@acceleratedcure.org

University of Massachusetts Medical School Multiple Sclerosis Center Memorial Campus, 119 Belmont Street Jacquith Ground Worcester, MA 01605 Principal investigator: Peter Riskind, MD Study coordinator: Janice Weaver Study coordinator phone: (508)793-6562 acp-study-umass0807@acceleratedcure.org

Multiple Sclerosis Clinical Center
University of Texas Southwestern Medical Center at Dallas
5323 Harry Hines Boulevard
Dallas, TX 76051
Principal investigator: Elliot Frohman, MD Study coordinator: Gina Remington Study coordinator phone: (214)645-8800 acp-study-utsw0807@acceleratedcure.org