The beginning

Hmmmm. So my first real blog post and it's inevitably going to be about Lou Gehrig's Disease (ALS). That grim reaper of motor neuron diseases. Why? Because I am on a journey they call 'genetic testing'. I have only just begun to walk down this confusing path to isolating a gene called SOD1 in my genetic makeup.

It all started back in September of 2008. I organized and completed my first 'Walk to Defeat ALS' in Portland, Oregon. It was the tenth anniversary of my mother's death from ALS and I wanted to do something in her memory. So, I gathered family and donations and we presented ourselves in red shirts (my mama's favorite color of course!) to the ALS Association in downtown Portland and we walked three miles with thousands of other people who were dedicated to raising awareness for this awful disease. It was my first encounter with a PALS (Person with ALS) since my mother's death. I felt her all around me that day, she was truly with me, walking alongside me, giving me strength and reminding me of that grace I knew I had. In the months leading up to the Walk, and during that time of organizing and fundraising I began to immerse myself in information about ALS. I came across hundreds of articles about stem cell research, government funding (or lack OF), ALS support groups, ALS TDI (the largest ALS drug research lab), and I wandered on dozen of wonderful people who had ALS, who were dying, yet managing to live so beautifully. Then, one day, I came across a term called Familial ALS, or FALS. The most common form of ALS is sporadic, which means it can affect anyone, anywhere. Some studies claim that military veterans have twice as much of a chance to get ALS than the average person. But there is a form of inherited ALS and the incidence of familial cases is thought to be 10 percent of all ALS cases. 20 percent of the familial cases are due to mutations in a gene called SOD1. In families, there is a 50% chance each offspring will inherit the gene mutation and may develop the disease.

At the time my mother was fighting the disease, I was very young. It was also a time of NO INTERNET! Imagine that? So, at the age of 22, when I lost my mother, I did not have a clue that this gene could be mutating in my DNA. Fast forward a decade and here I am with all this information at my fingertips. My world literally came crashing down around me when I realized that my mother also had a cousin who died of ALS soon after she did. I didn't do anything with this information right away. I sat on it for a few months. I started joining FALS support groups and met other people in the same situation. With a 10% statistic, I didn't think there would be many of us out there. But I was wrong, and with alot of cheerleaders to back me up, I eventually got into contact with someone in January who gave me information on genetic testing. There are several universities who are doing research on the SOD1 and the newly discovered ALS6 gene. To qualify for one of the studies, you have to have at least TWO family members who have been afflicted with ALS. One of those has to be a parent, sibling or offspring. I certainly qualify. But it was only when I was sent the preliminary paperwork from Emory University asking me to trace my family ALS history, that I found out there were more than two family members. At this point, I'm not sure how many members there are with ALS in my family.

The task of untangling a genetic history of Familial ALS is in front of me. Some may wonder what the importance is. But knowing the research that's done with the information gathered from the DNA of people with familial ALS, in the end it can only HELP. If I do carry this SOD1 gene-it means my children have a 50/50 chance of carrying it. Anything I do to raise awareness for ALS, will be for them. For a disease that has no cure, no treatments and will kill you in the end..there has to be HOPE. Sometimes, that's all there is...but it's a start.