Summer Update on our fight against ALS

I want to say how thankful I am for the support of my church and friends so I want to give this update of what Wendie and I have been doing in our part to fight ALS over the summer months.


As most of you know, we went to the ALS advocacy conference back in May. During that event we were able to advocate for needed legislative help for those fighting this disease (PALS). But this event was also very informative. There was a breakout session where we were able to meet and talk to researchers who are on the front line of the fight. During that time we got hooked up with several things.


During our time in DC, we stopped for a visit at the National Institutes of Health (NIH) in Bethesda. The NIH is a federally funded research facility and it is massive. We met with Dr Nath who is researching the relationship between the Herv K virus in ALS. At that visit I had a spinal tap and gave quite a bit of blood.


We made a second trip to the NIH two weeks ago for another research project specifically for the C9ORF72 gene mutation that I have. C9 along with SOD1 are what are known as “familial” types of ALS. This type of ALS is caused by a specific gene mutation in which there is exponential expansion in the genetic materials which causes significant damage and kills the motor neurons. This type of ALS is passed down through the gene pool.  This type of ALS is very rare, but its’ cause is known. There is quite a bit of research in this area. During this visit at NIH we met with Dr Floeter and her team. This consisted of two days of rigorous exams. I went through a thorough physical examination. I had pulmonary (breathing) tests. I also underwent an intense mental evaluation. C9ORF72 can also cause Front Temporal Dementia (FTD) so that is something I am being watched for. I actually enjoyed this part LESS than anything else. While at the NIH I underwent a second spinal tap, gave a ton of blood and had a skin biopsy. (Insert jokes about me being mental right here______________) :)


We came home on Tuesday night of that week (don’t tell the doctor, they don’t want you to travel a long distance after a spinal tap, and I’m hard headed). Last Sunday, I preached at my church and then Wendie and I hopped a plane to Baltimore, where I spent all day Monday at John Hopkins being seen by Dr Rothstein and his team. There I underwent all the above, minus the spinal tap. I also participated in a study to see if an altered sense of smell could be related to diagnosing ALS early. You haven’t lived until you take a smell battery of tests!


I also have enrolled in a study in Boston at ALS TDI. I’m helping them do some research as well. 


I will have to go back to the NIH and Hopkins every few months as they continue to monitor my progression. This means more blood, spinal fluid and tests.





Here is where we are: we still have no treatment for ALS. This disease has no known cure, and a known progression. People ask me if I had good visits, and that is a hard question to answer when you do so much without getting treated. But they were good, and here is why:


For a long time, ALS research relied on mice. They could replicate the disease in mice, but that model has severe limits. Now, though the miracle of modern science, the blood and tissue I have can be perpetually transformed into my own IPS cells. Scientists can then create ALS in my own cells and look at a realistic model. So my blood and skin and saliva are sitting in a freezer somewhere being used for research.


Dr Rotstein gave us a lot of information. A treatment for c9 is in the pipeline. This treatment, known as an antisense, is gearing up for a trial. John Hopkins has applied to be a trial site. The research nurse told me that when it becomes available, I will be a candidate. 



So here is where we are, no treatment but much hope. Wendie and I are doing our part to fight not just on our behalf, but on behalf of all PALS and my kids. You guys keep praying



Love YA!

Posted on July 22, 2016 .