There are many foundations around the world that raise funds for the treatment of rare diseases or to help people suffering from them. The MLD Foundation is one of them. Its name is short for the rare disease Metachromatic Leukodystrophy, for which there is still no cure. How was the organization created? What is its job? You will find the answers to these and other questions as synthesized information in this article.
History of the Organisation
MLD Foundation launching was a result of the sad journey of the Suhr family. In 1988 Lindy, their oldest daughter first displayed behavioural issues. For seven years, the girl received various diagnoses, all of which turned out to be wrong. This continued until the day she was diagnosed with Metachromatic Leukodystrophy. Her two sisters were tested for the illness at the time because she had already advanced too far to receive any treatment. Soon after, the youngest girl passed away due to complications caused by the disease. Because The Suhr’s didn’t want any other family to experience the same horror, not knowing about the disease and suffering alone, the MLD Family was set up as a global email discussion group and in 2001 the MLD Foundation was officially founded.
What Is the Purpose?
There are two main differences that distinguish MLD Foundation from the other establishments focused on MLD and leukodystrophy. First, unlike most foundations that support all kinds of leukodystrophies, or even other diseases this organization’s focus is only on MLD. Second, The MLD Foundation is more than just a mechanism for raising money to support research. It actively participates in the lives of the families affected by MLD and is aware of the need to help these families while treatment for MLD is actively pursued.
What is Metachromatic Leukodystrophy?
Known as MLD, metachromatic leukodystrophy is an uncommon genetic condition. Arylsulfatase-A, an enzyme necessary for blood metabolism, is absent in MLD patients (ARSA). Without this enzyme, sulfatides are NOT broken down but rather accumulate in the body’s white matter, damaging the myelin layer in the brain and elsewhere (demyelination). Without a healthy myelin sheath, there is a breakdown in nerve-to-brain transmission, which leads to a progressive loss of motor and cognitive abilities and an early death.
’We C.A.R.E.’ - The Slogan
Simply put, the MLD Foundation has four areas that are the goals of its activity. They are encoded in the slogan of the organization - ‘We C.A.R.E.’. So, MLD Foundation’s aim is to facilitate compassion, increase awareness, influence research, and promote education.
Compassion
The MLD Foundation seeks to ensure the people affected by MLD do not go without caring and useful support, in contrast to many other organizations that concentrate on generating money to support research and the relentless pursuit of a cure. Its compassionate mission is carried out under the “MLD Family” banner in a variety of ways: through recurring MLD Family Conferences and MLD Family Gatherings, where people can interact in person with other MLD-affected families; through an online private discussion group, where hundreds of people can gather to share their daily struggles, needs, and experiences; and through the MLD Family pages, where there is a virtual connection opportunity which is a more intimate way to for people to get to know one another.
Awareness
The MLD Foundation’s second goal is to raise awareness of MLD in the counselling, medical, scientific, and academic communities. Additionally, they want to raise awareness among the general public so that no one suffering from MLD receives an incorrect diagnosis or is discovered too late for any efficient long-term treatment. Every time there is an event that involves a mention of MLD, awareness is raised. A national and international strategic plan has been developed by MLD Foundation to carry out these initiatives. The best location to find out about these activities is the MLD Announcement email list.
Research
Many laboratories and hospitals throughout the world are conducting research to better understand MLD, create medicines, and ultimately find a cure. Research into various leukodystrophies, bone marrow and stem cell transplants, gene therapy, enzyme replacement, etc., both general and more focused, is also beneficial for MLD because it lays the framework for potential treatments. MLD is a metabolic storage illness, and as such, it has unrecognized effects on the body. This means that while the MLD-affected body does not react like those afflicted by other diseases, what is discovered via studying other diseases may or may not be immediately applicable to MLD. That’s why it is adamant that funding and encouragement for MLD-specific research are necessary.
Education
For a range of audiences, MLD Foundation provides MLD education in a number of formats. Education and Awareness are prerequisites for those who might want to fund or influence research to find a cure for MLD. MLD-101 is available online, and anyone who is touched by it should view it or go to one of the future Family Conferences. Additionally, these families ought to think about joining one of the online Family Discussion groups. Medical experts, carers, social workers, and school and private counsellors should all read the online version of MLD-101, and they will soon be able to access a number of fact sheets on the website of the MLD Foundation.
If you have a loved one suffering from Metachromatic Leukodystrophy or you are lucky enough to have just found out about this disease but would like to donate funds to help the organization, you can do so from the website of the MLD Foundation here. The non-profit organization uses the funds for serving people from all over the world who are affected by the disease.