Non-Profit of the Month – MDA

My non-profit of the month is the MDA – Muscular Dystrophy Association. I’m sure that many of you know that MDA from the Labor Day telethon hosted by Jerry Lewis, but there is much more to this organization.

I became a member of the MDA when I was diagnosed with Myasthenia Gravis and began being treated at one of their clinics in Florida. I was scared and felt alone. We hurt financially since I could no longer work. My husband was torn apart trying to take care of me and our children and needing to work full time. We were broken.

As soon as we entered the MDA clinic and met my caseworker, things began to fall into place. I would be seen by a doctor who specialized in Myasthenia Gravis, was provided information about the disease for me and my family, given the name and phone number of a woman who runs the local support group for people with MG and felt assured that I would get the help I needed. To this day, I have the same doctor and same caseworker. They are both a phone call away.

The Diseases The MDA Covers

1. Muscular Dystrophy Diseases – for example Limb-Girdle Muscular Dystrophy
2. Motor Neuron Diseases – for example Amyotrophic Lateral Sclerosis (ALS , also known as Lou Gehrig’s Disease)
3. Metabolic Diseases of the Muscle – for example Mitochondrial Myopathy
4. Diseases of the Peripheral Nerve – for example Charcot-Marie-Tooth Disease
5. Inflammatory Myopathies – for example Polymyositis
6. Diseases of the Neuromuscular Junction – for example Myasthenia Gravis
7. Myopathies due to Endocrine Abnormalities – for example Hyperthyroid Myopathy
8. Other Myopathies – for example Central Core Disease
9. The entire list can of diseases can be found on the MDA website.

Summer Camp

Summer camp opportunities are available to children with one of the MDA diseases, who are between the ages of 6 and 17. There is usually a one to one camper/counselor ratio at camp. Summer camp provides the opportunity for activities not normally available to children with an MDA disease. They are surrounded with others like them and get to be away from their parents for a week. In turn, they gain self-confidence and have a lot of fun!

MDA Advocacy

The MDA has a National Task Force for Public Awareness that is an advocate for MDA members and other people with disabilities.  You can also learn about upcoming legislation that affects people with MDA and how to advocate on your own behalf.

Research

The MDA’s main focus is research to find a cure for the MDA diseases and treatments that help people live longer and healthier lives.

MDA is the world’s largest non-governmental sponsor of research seeking the causes of and effective treatments for neuromuscular diseases, sponsoring 330 research projects annually.

The MDA funds research grants and works to turn research into treatments using the Translational Research Program. This has been found to get things moving faster, especially since many of the MDA diseases are rare.

Keeping Family Updated

During difficult times, like hospitalizations or surgeries, the MDA has created a way for families and friends to stay updated through the myMuscleTeam site. You can write about what is happening, coordinate what type of help is needed, etc. Your site is password protected so it is private.

Help The MDA

Donate – Besides making a yearly donation during the telethon, or putting some extra change into a fire fighter’s boot (all of which I am grateful for), you can help the MDA in other ways. Product donations are welcome, especially of office furniture, computers, crafts for summer camp. Before you donate, check to see if your employer will make a matching donation. You can also become a member of Jerry’s Kids and have a donation charged monthly to your checking account or credit card.

Volunteer – Give of your time during one or several MDA events, such as the MDA Lock-Up, Golf Tournaments and the Hop-A-Thon.

MDA Facebook Page

The Muscular Dystrophy Association has a Facebook page which keeps you updated on news and events and allows you to comment about what is happening in your own life.

I’m not happy that I had to come to know the MDA through getting one of the diseases they cover, but with the bad comes the good. I’ve felt love, support and kindness from a large non-profit organization that I didn’t think possible.

Have you been touched in some way by the MDA? Tell me about it.