Resources for those with neuromuscular disease.
At an MDA Lock-Up
I spent part of my day recently “locked-up.” No, not in a real jail, but with all of the “jailbirds” participating in a local Muscular Dystrophy Association (MDA) Lock-Up. While raising money, participants also raise awareness of neuromuscular disease and MDA programs.
Canine Companions for Independence
Canine Companions for Independence, a non-profit 503(c)(3) organization , trains and places assistance dogs. Their assistance dogs are trained to provide four different categories of help, including, service, facility, companion, and hearing.
Centers of Excellence and Neuromuscular Disease
Centers for Excellence provide cost efficient expert health care, leading to optimal outcomes. For individuals with neuromuscular disease, visiting a Center for Excellence can provide the opportunity for high quality, comprehensive medical care.
Charcot-Marie-Tooth Association Circle of Friends
I have a confession to make – I have no practical experience in fundraising. I have never put together a fundraiser on my own and find the task daunting. Recently I ventured into the fundraising arena in one of the simplest ways possible, through starting a Circle of Friends with the CMTA.
CMT and Physical Therapy Training Resource
Because Charcot Marie Tooth is relatively rare, many physical therapists do not have much training or experience with CMT. The Charcot Marie Tooth Association (CMTA)and Physiotherapy Associates, Inc. (PTA) have partnered to provide a resource for physical therapists and their patients.
CMT Awareness Month 2014
Soon after last year’s successful CMT Awareness Month finished, organizers of the CMT Awareness Month 2014 began planning for the 2014 event. Through this event, the Charcot Marie Tooth Association (CMTA) educates the public and raises awareness about the neuromuscular disease Charcot Marie Tooth.
Coping with Chronic Neuropathy DVD Review
In the DVD Coping with Chronic Neuropathy, Eugene Richardson brings uncommon understanding of neuropathy from his perspective as a long-term neuropathy patient, professional counselor, and patient advocate. He also displays humor and hope while covering this difficult topic.
Disease Registries for Neuromuscular Disease
Disease registries have been formed to aid researchers searching for qualified individuals to participate as subjects in research protocols. Such research is needed to advance knowledge regarding the diagnosis and treatment of neuromuscular disease.
Educational Webinars from the CMTA
The Charcot Marie Tooth Association (CMTA) now offers free educational webinars featuring top experts. Topics include a variety of topics related to diagnosis, treatment, and living with Charcot Marie Tooth (CMT). Make sure to view these important educational webinars.
Filling the Boot for MDA
You may see fire-fighters collecting funds at local parades and events. When you see your local firefighters campaigning to raise funds for the MDA, make sure to say thank you. Let them know how the MDA has helped you and your family. And, make sure to help fill the boot!
Free Resources from the MDA
The Muscular Dystrophy Association (MDA) offers a variety of free resources about neuromuscular disease. Updated regularly, these resources cover a wide variety of topics related to neuromuscular disease.
Inherited Neuropathies Consortium
Registering with the ICN was quick and easy. If you have CMT, consider registering with the INC so that you can be part of the search for more effective treatments and cures for the inherited neuropathies.
International Clinical Trials Registry Platform
The World Health Organization (WHO) maintains an international registry of clinical trials. The International Clinical Trials Registry Platform (ICTRF) lets clinical researchers communicate their research efforts internationally through registering their clinical trials.
International Neuromuscular Disease Websites
People from all over the world suffer from neuromuscular disease, and need to find accurate, appropriate, and effective information, support, and services. This article lists some of the web-links to organizations that serve the worldwide neuromuscular diseases community.
Link to partial listing of worldwide neuromuscular disease association (offsite link). [offsite link]
Find associations representing various neuromuscular diseases. This offsite listing contains links to some of the neuromuscular disease associations worldwide.
MDA SHOW of STRENGTH 2014
In it’s 49th year, the 2014 Telethon broadcast will again use MDA SHOW of STRENGTH as its title. This year, the show will run on Sunday, August 31, for two hours from 9:00 p.m. to 11:00 p.m. ET. The MDA Show of Strength Telethon will run exclusively on the ABC Television Network.
MDA Transitions Center
The Muscular Dystrophy Association Transitions Center focuses on the needs of teens and young adults with neuromuscular disease. Launched in 2011, this site offers support, information, and resources targeting this group while also raising awareness of the challenges this group will experience.
MDA's Free Webinar Series
The Muscular Dystrophy Association (MDA) has produced a series of free live and archived educational presentations called the Public Webinar Series. Expert-led topics include a variety of important issues. Make time to attend a high quality educational presentation from your own home.
MDA’s Shamrocks Against Dystrophy Program 2015
Each year, retailers all over the U.S.A. sell green Shamrocks and gold Shamrocks. The money raised through the Shamrocks Against Dystrophy Program funds research, education, summer camps through the MDA. In 2014, Shamrocks raised $21 million!
MDAs Free Informational Resources
The Muscular Dystrophy Association (MDA) offers a variety of free informational resources about neuromuscular disease. Updated regularly, these resources cover a wide variety of topics related to neuromuscular disease.
Medical Equipment Assistance Programs
Many individuals with neuromuscular disease require medical equipment. The cost of equipment can be prohibitive, however, and medical insurance does not always provide good coverage. Fortunately, there are programs available to assist individuals in obtaining the needed equipment.
Muscular Dystrophy Association (MDA) Resources
Find out about the many resources offered by the MDA for those with neuromuscular diseases, including information, clinics, research, and summer camp for kids.
My Family Health Portrait Resource
The My Health Family Portrait tool can help you map out your family health history. Available online, this tool is simple and easy to use. You may find this tool to be useful for communicating this important information to your health care providers.
Neurology Now Magazine
Neurology Now, a magazine published by the American Academy of Neurology, and its companion website provide readers with accurate and readable articles about a variety of neurological diseases, including neuromuscular disease.
Support Groups for Neuromuscular Disease
If you do not yet belong to a support group, I strongly urge you to find a support group in your area. The relationships that you build will help you to live, cope, and maybe even thrive despite neuromuscular disease.
Tales of a Shambassador
As area businesses again blossomed with green and gold Shamrock’s during February and March of 2015, I was again asked by my regional MDA office to act as a Shambassador. My duties include visiting area businesses that participate in the MDA Shamrocks program to say thank you.
Thank You Jerry Lewis
For more than 50 years, Jerry Lewis tirelessly served the Muscular Dystrophy Association (MDA) and the neuromuscular diseases community, raising both funds and awareness. The magnitude of Lewis’ service cannot be denied and will not be forgotten.
The CMT Survivor's Guide
The Charcot Marie Tooth Association (CMTA) recently published a new resource for individuals who have been diagnosed with Charcot Marie Tooth (CMT) titled CMT Survivor’s Guide: a resource guide for living life your way.
The Rare Clinical Diseases Research Network
According to the Rare Clinical Diseases Research Network (RDCRN) website, the purpose of the RDCRN is to increase collaboration between the research and treatment efforts of the scientists and clinicians working with many different types of rare disease.
Visit to an MDA Clinic
Across the USA and Puerto, the MDA provides treatment at 200 clinics specializing in neuromuscular disease. These clinics serve individuals with over 40 types of neuromuscular disease. Through registering with their clinics, you too can receive world class medical care by a team of specialists.
Worldwide Neuromuscular Disease Consortia
Across the world, individuals are affected by neuromuscular disease. Finding effective information, support, and services plays a key role in managing neuromuscular disease. Access a list of website addresses for international consortia that serve the neuromuscular disease community worldwide.
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