Muscular Dystrophy Project Resources |
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Family and Patient Organizations
Muscular Dystrophy Association (MDA) is a health agency made up of scientists and volunteers. MDA offers services like medical exams, flu shots, support groups, and summer camps for kids. They also help with purchase of wheelchairs and leg braces. For more information, visit their web site at www.mdausa.org.
Muscular Dystrophy Association
In Colorado
720 South Colorado Boulevard, 480-S
Denver, CO 80246
(303)691-3331
Fax: (303)691-3379
Email: denvereast@mdausa.org
To register with MDA if you have a neuromuscular disease, make a clinic appointment and find out more information about other services for people and families affected by a neuromuscular disease in MDA's program, please contact
MDA in Colorado.
Muscular Dystrophy Family Foundation (MDFF)
was founded in the year 1958. They provide adaptive equipment. This includes wheelchairs, hospital beds, van lifts, ramps, shower chairs, communication devices, and breathing machines. They also offer support services, such as clinical programs, home visits, and social outings. For more information, go to their web site at www.mdff.org.
Parent Project Muscular Dystrophy (PPMD)
was founded in 1994 by parents of children with DBMD. Their mission is to improve treatment, quality of life, and long term outlook. Their web site, www.parentprojectmd.org, offers information about treatment and personal stories. They have a conference every summer where doctors, scientists, and parents learn about research, care, and advocacy issues.
Finding Clinical Trials
A government web site, Clinicaltrials.gov, provides a list of current federal and private clinical trials. You can search for trials related to DBMD. You will find information about studies, who may join, locations in the United States, and phone numbers for more details. To find out more, go to their web site at http://clinicaltrials.gov.
Kid-Friendly Web Sites
Kids Health
is a web site that gives doctor-approved health information about infants, children, and teens. The web site offers resources for kids, teens, and parents. For more information, go to www.kidshealth.org.
Kid Quest on Disability and Health
is a CDC-sponsored web site for middle school students. It gets kids thinking about people with disabilities. Parents and teachers can change the materials to meet students' learning styles and levels. The topics can be used in lessons about health, social studies, and tolerance in society. Parents and teachers can work with students to share ideas, talk about issues, and encourage reflection. Students can use the site on their own, too. For more information, visit the web site at www.cdc.gov/ncbddd/kids/default.htm.
Health Care
The Children’s Hospital
Rehabilitation Clinic
13123 East 16th Avenue;
Aurora, CO 80045
(720) 777-2806.
The primary goal of The Children’s Hospital Rehabilitation program is to optimize each child’s abilities to adapt to the environment, to ease the effects of disability on the child’s development, and to allow the child to be fully included in community living. For more information, call the number above or go to their web site at www.thechildrenshospital.org/conditions/rehab/index.aspx
Insurance Coverage
Patient Advocate Foundation (PAF)
is a national nonprofit organization. Their goal is to protect patient rights. They help solve insurance, job, and debt matters related to health conditions. Go to their web site at www. patientadvocate.org for more information.
Genetics Information
Dolan DNA Learning Center helps people understand genetics:
• DNA from the Beginning - Lessons on DNA, genes and heredity (http://www.dnaftb.org/dnaftb/).
• Your Genes and Your Health - This web site has a section on Duchenne and Becker muscular dystrophy (www.ygyh.org).
Understanding Gene Testing is a web site that gives basic information about gene testing. It answers common
questions about the science, possible benefits, and possible risks of gene testing. For more information, go to
www.accessexcellence.org/AE/AEPC/NIH/index.html.
If you have any questions about MD STARnet in Colorado please contact:
April Montgomery, MHA
Project Coordinator
Colorado Responds to Children with Special Needs
Colorado Department of Public Health and Environment
4300 Cherry Creek Drive South
Denver, CO 80246
303-692-2620
More specific inquiries about these data or CRCSN are welcome and can be addressed to:
to write or call:
Colorado Responds to Children with Special Needs
Colorado Department of Public Health and Environment
4300 Cherry Creek Drive South, DCEED-CRC-A3
Denver CO 80246-1530
Phone: (303)692-2700
Fax: (303)782-0904