I want to give you, my faith family an update and some ways you can pray.
Tomorrow Wendie and I will be heading to Washington DC to ask some key elected officials to release money for ALS research. This comes at a critical time. Right now there are several major things going on which are a DIRECT result of the Ice Bucket Challenge (thanks to ALL who took part).
On Thursday we will be at the National Institute of Health as I begin the early process of another drug study. This study will look at the connection of ALS with diseases like HIV. The theory is that ALS is triggered by a retrovirus (we all have genes in our DNA that really do nothing often called “junk dna’). The study will see if this gene has been turned on and can be controlled with a medical cocktail. Since I cannot travel after having a spinal tap, we will be coming home on Friday.
One of my biggest fears upon diagnosis in December was not for me, but my kids. I did NOT want them to have to face what I am facing. Dr Caress told me during my clinic visit at Wake Forest Hospital that would not be an issue. It appears he might have spoken too soon.
There are two types of ALS. The first is sporadic ( a person gets ALS without any reason). The second is familial (bad genes are passed down through bloodlines). ALS is very rare, familial ALS makes up only 10% of ALS. To sum this up: to have familial ALS is liking winning the Powerball and getting hit by lightning in the same day.
When I was at the Duke clinic in March, Dr Bedlack took some blood for genetic testing. I had completely forgotten about that until Wednesday. I got my test results back around noon, and I tested positive for familial ALS.
It was a huge gut punch, I cannot lie. I did not take it as well as I’d have you think I took it. This means my children now have a 50% chances of getting ALS or some other disease that leads to dementia.
So how can you pray?
1- Pray that we can persuade congress to spend some money for something good. This comes at a very critical time.
2- Pray for us as we enter this study. If I’m accepted it will mean many trips to Bethesda for the next year. I want to be in this study, because I desperately want to end this monster before it can touch “Wijah, Ben Ben or “Junebug”.
3- Pray I dont’ get discourages, because at times it gets hard.
We will miss you guys this week, but know we love you very much. Thanks for listening and thanks of praying
Its late, so I won’t spell check or edit this post.