About Dystonia

Dystonia is a neurological movement disorder that causes involuntary muscle contractions, which force the body into abnormal, and sometimes painful, movements or postures. Dystonia affects men, women and children of all ages and backgrounds and causes varying degrees of disability and pain, from mild to severe. It is the third most common movement disorder behind only Parkinson’s and Essential Tremor (estimates suggest that at least 300,000 – 500,000 people are afflicted in North America alone). There is presently no cure, but some treatment options exist and scientists around the world are actively pursuing research towards new therapies, and ultimately a cure.

 

About Cure Dystonia Now

Cure Dystonia Now is a public charitable organization that is run by volunteers and is working with researchers on cutting edge treatments and ultimately a cure for Dystonia. We are pleased to be working with several of the pre-eminent scientists in the field of Dystonia, who comprise our Medical and Scientific Advisory Council (MSAC). The MSAC conducts peer-review of research applications, sets the direction of research and makes recommendations to the Board for funding research. You can read about the research we have funded here

 

CDN Org Dox & Filings

IRS Form 990
Form 990 is an annual reporting return that certain federally tax-exempt organizations must file with the Internal Revenue Service (IRS). It provides information on the filing organization’s mission, programs and finances.

Click here to view CDN’s most recent Form 990

 

By-Laws

Click here to view CDN’s By-Laws

 

Conflict of Interest Policy

Click here to view CDN’s Conflict of Interest Policy

 

Medical and Scientific Advisory Council

The Medical and Scientific Advisory Council (MSAC) is comprised of pre-eminent scientists in the field of Dystonia. Members will conduct peer-review of research applications, set the directions of research and make recommendation to the Board for funding.

David Eidelberg, MD
The Feinstein Institute for Medical Research
North Shore-LIJ Medical Group

Steven Frucht, MD
The Mount Sinai Medical Center

Ellen Hess, Ph.D.
Emory University School of Medicine

H.A. “Buz” Jinnah, MD, Ph.D.
Emory University School of Medicine

 

D. Cristopher Bragg, Ph.D.
Massachusetts General Hospital

Harvard Medical School

Board of Directors

Marc Miller
Director, Co-President, Treasurer & Secretary

Robin Miller
Director, Co-President

Sidney Miller
Director, Chairman

 

Youth Advisory Board

•Julia Adwar
•Mikaela Adwar
•Ashley Allegretti
•Kyle Basis
•Sydney Basis
•Brooke Bolnick
•Jeffrey Bolnick

•Casey Brand
•Hallie Braunstein
•Amanda Braunstein
•Brendan Brotman
•Alyssa Casale
•Kelsey Clifford
•Ilyssa Glicksman

•Allie Gold
•Rachel Gold
•Adam Katz
•Brooke Koeppel
•Aiden Miller
•Jordyn Miller
•Justin Miller

•Joshua Rosenberg
•Jordan Rosenberg
•Jacob Rosenberg
•Erika Schreiber
•Aaron Shapiro
•Daniel Shapiro

 

 

resources

Dystonia Coalition

Dystonia Medical Research Foundation

National Institute of Health (NIH) National Institute of Neurological Disorders and Stroke (NINDS)

National Spasmodic Dysphonia Association

Tyler’s Hope for a Dystonia Cure

 

Dystonia patient registries

Patient registries help researchers better understand dystonia by collecting information directly from volunteers who are diagnosed. Individuals are encouraged to consider participating:

 

Global Dystonia Registry
The Global Dystonia Registry is part of the Dystonia Coalition, a cooperative project between medical researchers and dystonia patient advocacy groups, for which the DMRF serves as an administrative center.

 

Dystonia International Patient Registry (DiPR)
The DMRF is partnering with Tyler's Hope for a Dystonia Cure in support of this registry which focuses on DYT1 dystonia


Grateful Acknowledgement

We gratefully acknowledge the Dystonia Coalition, Tyler’s Hope and in particular the DMRF for all the assistance and guidance provided and which they continue to provide, which has permitted us to not expend resources duplicating the outstanding work they perform.

donations

  • Your gift to Cure Dystonia Now will fund research toward more and/or improved treatments, and ultimately a cure, for Dystonia. We welcome and appreciate donations of any amount. Donations to Cure Dystonia Now are tax deductible as allowable by law.
  • Click here to learn more.

contact us

Cure Dystonia Now
201 Old Country Road, Suite 205
Melville, NY 11747
Office: (516) 584-4156
Email: info@curedystonianow.org