Individuals and families are often asking what they can do to help work towards a cure for muscular dystrophy. There are several different options you can consider.
Participate in Research
This is a very exciting time in muscular dystrophy research with several new and promising treatment strategies. This progress was made possible by individual's participation in research. There are several ways you can participate:
Registries: There are national registries for several different types of muscular dystrophy. Some are listed below:
Facioscapulohumeral Muscular Dsytrophy (FSHD): http://www.urmc.rochester.edu/nihregistry/
Myotonic Dystrophy: http://www.urmc.rochester.edu/nihregistry/
Dystrohinopathies (Duchenne and Becker Muscular dystrophy):Coming soon at www.parentprojectmd.org
Charcot-Marie-tooth (CMT): http://www.med.wayne.edu/neurology/clin_programs/labs/CMT/enroll.htm
The University of Minnesota MD Center registry: This is a registry of patients for all types of muscular dystrophy to help connect participants with ongoing research studies.
Ongoing research studies at the U of MN: By volunteering to participate in research studies, you will help in the possibility of gaining insights for new therapies. For more information, please contact the Clinical Research Coordinator at 612-625-4882. Studies now enrolling:
Duchenne Muscular Dystrophy
United Dystrophinopathy Project: (UDP)
This study is aimed at understanding how mutations in the dystrophin gene determine the symptoms and severity of muscular dystrophy. A second goal of this study is to establish a registry of patients with dystrophinopathies. We will notify you of clinical trials for which you might be a candidate, if you give us permission to do so.
UCD0305: CINRG Research Group
The primary goal of this study is to establish the largest long-term assessment of people with Duchenne muscular dystrophy (DMD) between the ages of 2 and 30 years. Study participants will be enrolled for five years. We will collect details on patient's physical abilities across all ages, medical problems they experience, and how they use healthcare services over this five year period. A second goal is to look for an association between genes and response to treatment of DMD.
Healthy Lifestyles Study
A parent focused weight loss treatment program to lead to weight loss in overweight boys ages 8-17. Themes of healthy lifestyle habits, nutritional information, non-sedentary recommendations, and positive parenting are addressed in individual sessions. If interested, please call 612-627-1995.
Myotonic Dystrophy- CNS Study
The primary purpose of this study is to learn more about the changes that occur in the brain of individuals with Myotonic Dystrophy. Participation involves having an MRI of the brain, neuropsychological testing (testing to see how you learn and remember things), and collection of blood and skin samples.
Resources: There are two national resources for clinical trials:
National Institute of Health: www.clinicaltrials.gov
Make a Donation
You can have an immediate impact on programs to advance health of humans making donation. We always need your help in supporting our clinical, educational and research activities, and encourage you to send your gifts to the Minnesota Medical Foundation a nonprofit organization affiliated with the University of Minnesota. There are three ways to make your gift,
1. ON-LINE at mmf.umn.edu
2. By Mail. Send your check to: Minnesota Medical Foundation, PO Box 64001, St. Paul, MN 55164-0001. Note “Muscular Dystrophy Center” on the check.
3. By phone with your credit card by calling 1-800-922-1663 or 612-625-1440.
4. If you have any questions, call the MDCenter directly at 612-626-0822
Whether you make your gift on-line, or by mail or phone, please be sure to specify the Paul and Sheila Wellstone Muscular Dystrophy Center. Thanks in advance for your generosity and confidence in the work the MDCenter does.
DonateBiopsy Material
If you are having a biopsy or have had a muscle biopsy in the past, remaining tissue can help aid in muscular dystrophy research. If you are having a muscle biopsy it can be done at the University, where we have the ability to store the muscle for future studies and to culture muscle cells so that we have a long-lasting supply of living cells. Also, if you are undergoing any type of corrective surgery that involves muscle, and would be willing to have a piece used for research, please contact the MDCenter ahead of time to arrange for this to occur. If you are interested in muscle tissue donation please contact Joline Dalton at 612-625-7967 or by email at jcdalton@umn.edu.
Donate Autopsy Material
Autopsy donations are very important for our research studies. The logistics of autopsy donations need to be arranged ahead of time, and can be arranged years in advance. We have packets with detailed information we can send out to you by mail or email. If you have any interest in finding out more about how to do this, please contact Joline Dalton at 612-625-7967 or by email at jcdalton@umn.edu.