ALS Advocacy Events - May, 2015

[rknt50a]

This week there are several advocacy events ...

a.) ALSA Advocacy Conference --
Here's the attendee packet.


b.) Hope Now for ALS Rally --
Here are details.

I hope that people attending a.) will stop by for b.)
(Which is about much, much more than GM604. It's about faster paths to get investigational drugs to PALS.)

Finally,

c.) Worldwide Weekend of Prayer for those dealing with ALS
Here's the scoop.

Thanks, all.

 

[MaxEidswick]

thanks!


.

 

[4tloml]

Jeff & I arrived in DC last night. We missed the registration deadline for the ALSA Advocacy Conference--pretty much decided spur of the moment to take that Washington DC trip we've always wanted and at least show up for the Hope Now for ALS rally.

My understanding is that the rally and meeting w/FDA is to encourage accelerated approval for drugs that have shown safety in early trials (Phase 1 & 2), and especially those with good efficacy data in Phase 2. IMHO, the cost & process of completing Phase 3 trials before approval leaves this generation of PALS (at least most of them) out in the cold. Our PALS deserve a choice about the risk the are willing to take and the freedom to take it. Post phase 2 gives enough data sometimes.

 

[MaxEidswick]

>Our PALS deserve a choice about the risk the are willing to take and the freedom to take it.

Ditto that!

 

[Nuts]

Matt and I checked in last night for ALS Advocacy Day. I feel so fortunate to be able to be here two years in a row, but I sure wish Max and Sandy were here again! My honey headed straight for the Market Place, as he's very interested in the equipment, and he learned that Permobile has replace the C series chairs with new and improved models, and so now he has chair envy. ARGH Today's presentations on state of research are calling my name, so I'd better get moving so I can get us there in time. So far it's easier than last year, since hubby's in the chair and moving faster than me (once we get him into it).

I spent a lot of time last night thinking of Jim and Marcey. Packing and unpacking and setting up... The room seemed very accessible, but the I lowered the shower bench and realized that it isn't flat, so this morning's challenge is to make sure hubby doesn't slide off it while showering. Sigh.

 

[MaxEidswick]

>but I sure wish Max and Sandy were here again!

me 2! :-(

 

[rknt50a]

ALS Advocacy: Some Stream-of-Consciousness Thoughts From #ALSAdvocacyDay2015