DMRF Programs

"8-18" Children's Program
The DMRF was founded in 1976 by Samuel and Frances Belzberg of Vancouver, British Columbia when their young adult daughter was diagnosed. Since the very beginning, the DMRF has been dedicated to helping children.

The 8-18 Program is an effort to pay special attention to the needs of children and teens living with dystonia and their families. This includes educating kids and parents about the medical aspects of the disorder and available treatments. It also includes providing these families with tools and strategies to help cope with school, peers, family dynamics and responsibilities, and the hurdles of everyday living.

The DMRF has a collection of publications particularly for children and families. Look for items marked "Family Friendly" on the Publications and Videos listing.

For more information contact the DMRF at 800-377-DYST (3978) or dystonia@dystonia-foundation.org

Brain Donation Program--Donors Needed
Donating your brain to science is a selfless act to help advance dystonia research. While financial donations provide researchers with the essential funding they need to conduct investigations, brain donations provide the invaluable opportunity to physically examine the area of the body where symptoms originate. The brains of deceased dystonia-affected persons (with all forms of dystonia) and their family members are a precious and scarce resource that researchers value deeply in the pursuit of a cure. You can have a very real effect on the advancement of dystonia research without sacrificing anything from your existing life.

The DMRF is working in conjunction with the National Institute of Child Health and Human Development (NICHD) Brain and Tissue Bank for Developmental Disorders at the University of Maryland, along with dedicated researchers to identify critical information about dystonia, but we cannot do this without you.

Your body contains clues vital to solving the puzzle of dystonia. Please consider becoming a brain tissue donor and discuss this possibility with your family members.

Why Donate?
Giving scientists the opportunity to study brain tissue is a crucial step toward developing improved therapies and a cure for dystonia in all its forms. Brain donation provides the opportunity to contribute to the field of dystonia research in a practical, tangible way that will assist researchers working today and resonate in future generations.

Volunteering your brain to science so that researchers can learn about dystonia is the greatest donation to research an individual can make. By combining brain donation with your monetary support, you multiply your assistance to the progress of dystonia research immeasurably.

Most religious organizations fully accept tissue donation. Brain donation embodies the highest principles upon which all religions are based: generosity, compassion, and love.

Beginning the Process
The first step to becoming a brain donor is to request additional information and an enrollment form from the DMRF. Your donor information remains confidential, and you have the right to withdraw from the program at any time.

To learn more, contact the staff of the DMRF at 800-377-DYST (3978) or brainbank@dystonia-foundation.org

You may also contact the NICHD Brain and Tissue Bank directly by phone at 800-847-1539 or by e-mail at bttumab@umaryland.edu

Dystonia Awareness
Dystonia Awareness Week occurs every spring, but dystonia awareness is a year-round campaign.

Support groups and volunteers are active throughout the year with unique fundraising events and educational endeavors. Members organize Walk n Wheel events, host benefit suppers, set up exhibits at shopping malls, are featured in newspaper articles, and initiate letter-writing campaigns.

The DMRF distributes a variety of awareness materials, including posters, brochures, bookmarks, and envelope stuffers. The awareness materials are available in several designs. The DMRF has an extensive collection of educational publications as well as an educational video entitled Dystonia: A Movement Disorder and a children's video entitled I Am Not Dystonia. The DMRF is happy to supply materials for individual and group awareness events.

Celebrate Dystonia Awareness Week the first week of June!

For more information contact the DMRF at 800-377-DYST (3978) or dystonia@dystonia-foundation.org

Junior Advisory Council
The Junior Advisory Council is a network of young professionals and young adults between the ages of 18 and 40 who are working to encourage awareness and raise money for dystonia research. The Junior Advisory Council is committed to promoting dystonia awareness and education in fresh and innovative ways.

Junior Council members have initiated many original and effective awareness and fundraising events throughout the United States and Canada. These events include happy hour receptions at neighborhood restaurants, evening events at art galleries, college sorority and fraternity events, adopting streets on behalf of the DMRF, running marathons, and others.

For more information contact the DMRF at 800-377-DYST (3978) or dystonia@dystonia-foundation.org

Legislative Advocacy Program
Legislative advocacy is an important component of dystonia awareness. The DMRF encourages the United States government to allocate more federal funding to dystonia research and to uphold the advances made in the Individuals with Disabilities Education Act of 1975, the American Disabilities Act of 1990, and other legislation intended to protect people with disabilities.

Recent advances in medicine and genetics have social implications that affect individuals with dystonia and their families, including issues pertaining to genetic non-discrimination and the ownership of genetic information.

The aim of getting involved in the process is to familiarize our government leaders with dystonia and to inform them of the legislative issues that affect our members.

For more information contact the DMRF at 800-377-DYST (3978) or dystonia@dystonia-foundation.org.

Oromandibular Network
A forward thinking group of individuals who are affected by  oromandibular dystonia (OMD) created a specific support network for persons with this form of dystonia.

The network provides guidance, support, and one-on-one help to others with OMD via computer, phone, and mail.

For additional information please contact one of the group leaders:

Larry Stahl
Phone: 860-565-2564
E-mail: artscifi2@sbcglobal.net