Dystonia is a movement disorder that causes the muscles to contract and spasm involuntarily. The neurological mechanism that makes muscles relax when they are not in use does not function properly. Opposing muscles often contract simultaneously as if they are “competing” for control of a body part. The involuntary muscle contractions force the body into repetitive and often twisting movements as well as awkward, irregular postures. It can impact any part of the body and depending on the type of dystonia, it can onset from early childhood through adulthood.
The Dystonia Medical Research Foundation was founded in 1976. It has grown from a small family-based foundation into a dynamic membership-driven organization led by a Board of Directors and network of volunteers with personal connections to dystonia. The organisation is driven to find a cure, and to providing support to people affected by dystonia.
The Dystonia Medical Research Foundation have recently made the jump into the social network scene and have a presence on MySpace, YouTube, Twitter, and Ning.com amongst others.
Tamara Reed, Senior Associate Director of Development at the Dystonia Medical Research Foundation says that this has led to an increase in the number of inquiries for information, requests to start support groups and requests to hold fundraisers to support their mission. She adds that it has also led to an increase in revenue. They are receiving gifts from donors who have never contributed before and also noticing increased gifts from existing donors.
The Dystonia Medical Research Foundation has a donor e-mail database of around 13,000 addresses and carry out e-mail campaigns with varying amounts of success. They have found that often the most successful e-mail fundraisers are those that come from a volunteers e-mail address. When they run their campaigns this way the response rate increases significantly. As with any fundraising campaign, if the potential donor knows the person asking for a donation the odds increase that a gift will be made.
Tamara's advice for non-profit organisations launching themselves online is to be vigilant about creating their online presence. They need to be active with their audience, providing helpful information and feedback. It takes time to build your brand, but is well worth the effort.
You can help raise funds for the Dystonia Medical Research Foundation by shopping at iGive or using GoodSearch.
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