5 Reasons Why YOU Should Participate in PMP 2.0

 

Dear Brother or Sister with ALS,

 

I get it – it’s hard to keep up with all the ALS research and figure out which studies and clinical trials to go for (if you even qualify). Then there’s the expense of travel, the headaches (sometimes literal) of side effects, and the nagging worry that you might be getting the placebo all along.

 

But what if I told you that there was a guaranteed way you could help revolutionize the system of clinical trials and advance progress towards a cure faster…without ever leaving home?

 

That’s the power of ALS.net’s Precision Medicine Program. PMP 2.0 opened for enrollment this week and is recruiting 450 new participants to join the 300 people with ALS who are already enrolled (like me!).

 

Here are 5 reasons you should participate:

 

1.   You don’t have to dodge snowstorms or the Patriots Superbowl parade to get to Boston like I did in PMP 1.0. This time, everything can be done from home or remotely.

 

Here’s what will happen: You sign up online and everything happens online. After completing a few introductory documents, like electronically signing a consent and HIPPA form, you’ll create a baseline profile for you and your ALS experience. You’ll call into a phone number and say a silly sentence: “I owe you a yoyo today” 5 times. And you’ll complete an ALS Functional Rating Scale (FRS) survey – you know, the questions about your handwriting, dressing & eating habits, breathing, etc. – that you already do every time you see your neurologist anyway. Then, based on all that, they may ask you to start recording your movements at home. If so, you’ll receive an envelope containing 4 red accelerometers that will track the movements of your arms and legs for the next 6 days. On 3 of those days, you’ll do a series of exercises that take 10 minutes.

 

That’s it. Easy peasy. But how can it revolutionize the science?

 

2.   The FRS is like trying to gauge the exact temperature of your coffee by sticking your finger in it. It’s just not very precise. Take the question about cutting food, for example. There’s a 1-point difference between “somewhat slow and clumsy, but no help needed” and “can cut most foods, although slow and clumsy; some help needed.” So if we’re at a restaurant and I don’t feel like sawing through my steak in front of my friends so I pass it to my husband to cut, has my ALS gotten worse? How many times can this happen before I lose an FRS point? Does everyone score this question the same way? (Honestly, I’ll probably just cut my own darn steak to keep from losing a point…)

 

And that’s the problem. The clinical trials are making decisions about whether new drugs are effective based on whether I report “a slight but definite excess of saliva” or “moderately excessive saliva.”

 

3.   In the PMP, one person’s accelerometers generate millions and millions of data points every month. These little red trackers are so sensitive; they measure every microsecond, in a three-dimensional way of a person’s movement while being worn. It’s a much more accurate way to measure an individual’s ALS progression over time, and from limb to limb. In the same way, the voice recordings track the progression of bulbar symptoms.

 

If ALS.net can generate enough data from all participants to show the FDA that accelerometers and voice recordings are better than the FRS, it could become the new standard in clinical trials. And there’s the revolution, my friends.

 

4.   Everyone with ALS can do this. Who isn’t frustrated by the 2-3 year window to participate in clinical trials?? The PMP is a chance for people who have “aged out” of eligibility to still participate in a meaningful way to advance the science towards a cure. We still NEED you! 

 

Plus, with ALS.net’s online dashboard, you can see your own progress. What clinical trial lets you see your data?

 

5.   Turns out, house arrest monitors are the perfect fashion accessory. When I first started participating in PMP 1.0 18 months ago, I tried to hide the little red accelerometers under long sleeves and socks because I thought they looked like house arrest anklets.

 

These days, I’m proud to show them off. They’re a conversation starter and I can talk about the importance of the program and money for ALS research.

Learn more about PMP 2.0: https://www.als.net/pmp2