Rob and I stayed on west coast time during our visit to Boston, lazily ordering room service on our first couple of days because going outside and fending for ourselves would have required too much energy. This is why I was still in pajamas, and showing a rather inappropriate amount of leg when the server brought breakfast up at 1pm on Saturday. This isn’t like a sexy thing. I was in my wheelchair probably scrolling through my Facebook feed while Rob watched football. And you know what? It was perfect. The server may have found it even more perfect if I’d been wearing pants, but you can’t please everyone.

As I’ve already reported, we were in Boston for the ALS TDI party, but we were also there so that I could participate in TDI’s Precision Medicine program. On Monday morning, we got up “early” aka 9:30am, and headed down the street to Massachusetts General Hospital. The first part of the program involved having blood drawn, followed by a small skin biopsy, during which they removed a part of my arm that was about the size of a pencil eraser. The whole thing took 10 minutes.

Then we were off to ALS TDI’s offices in Cambridge. ALS Therapy Development Institute is a biotech company that works exclusively on screening ALS drugs. It’s definitely worth sharing a bit about their recently launched personalized program, which is far more robust than it would have been prior to the Ice Bucket Challenge:

1. The skin biopsy they took will be used to grow my very own motor neurons from my very own stem cells. This means there will be a dish with my ALS inside of it. TDI will test more than 50,000 drugs against MY SPECIFIC disease. It will take a couple of months to grow the motor neurons and get started, but as I type, this is in progress.

2. They will sequence my entire genome. According to TDI’s Study Description, they are doing this in order to elucidate genetic background to clinical phenotype. See how smart they sound?

3. In the meantime, I will wear wrist and ankle monitors for one week every month, which makes me look exactly like a disabled prisoner who has escaped house arrest and probably should have made some kind of mascara attempt.

4. Every other day during that week of monitoring, I have to do a short series of exercises that are tracked by the Actigraphs that I’m wearing. These things are not subtle, did I make that clear already? I’m beginning to resemble IronMan. The exercises include raising and lowering my legs and arms, one at a time, as much as possible in 45 seconds, with 45-second breaks in between each activity.

5. I will receive a call once a month and am expected to say nothing into the phone except “I owe you a yoyo today.” Five times. I’m definitely going to try to do this in a very public place, while wearing my monitors, and then watch as people slowly back away.

6. Also monthly, I have to fill out the same Functional Rating Scale (FRS) that I do every three months at my ALS clinic visits. This is a subjective measure of my progression and will be compared to what the monitors are picking up. Now that I’m reading the scale myself instead of having a nurse interview me, I can see some very interesting things about it:

• In the Swallowing Food category, you go from the choice “Normal Eating Habits” (which is where I am now) to the next choice “Early Eating Problems—Occasional Choking.”
• So, just to quickly recap, CHOKING is simply an EARLY problem, and there are three additional options that are worse than that. Good to know.
• Orthopnea (shortness of breath whilst lying flat or sleeping) is another category on the scale. You are at your worst in that category when you are “Unable to Sleep.”
• The category where I am at my worst is Climbing Stairs. This is because I “Cannot Climb Stairs.”

When ALS TDI set out to launch this program, they had the funds to enroll 25 patients. Because of the Ice Bucket Challenge, they can now enroll 400. The potential for true discovery is huge. ALS affects people so differently, in terms of where it starts and how quickly it progresses. With this personalized approach, the hope is that they’ll uncover subgroups of the disease—and treatments for those subgroups. This is highly preferable to putting 400 people into a clinical trial and judging something a failure because it doesn’t work for a high enough percentage of the participants.

I am so glad that there is Science in the world. It’s amazing to me what people are accomplishing while I’m merely eating bacon in my underwear.

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