Old 06-08-2017, 11:12 AM #1 (permalink)
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Default Patient Fellows Program at International Symposium on ALS/MND in Boston, USA

Hello everyone,

I hope people with ALS will consider applying to this program and being part of this year's ALS/MND International Research Symposium in Boston in a very unique way:

https://alsmndpatientfellows.wordpress.com/

Feel free to follow up with questions of course!

Rob
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Old 06-08-2017, 12:49 PM #2 (permalink)
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Default Re: Patient Fellows Program at International Symposium on ALS/MND in Boston, USA

Rob,

I wouldn't discourage anyone from applying if they have the resources and know they would get enough out of it that they want to make that investment of time and money, but this program has the appearance of window-dressing for TDI. The lack of granular objectives and outcome measures in a disease where so much false hope is traded is extremely disappointing.

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Old 06-08-2017, 01:11 PM #3 (permalink)
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Default Re: Patient Fellows Program at International Symposium on ALS/MND in Boston, USA

The symposium is a wonderful experience if you are into hard science. I plan to attend this year again. I think it is true that you want to be sure the sessions meet your needs and interests. " scientific" and " clinical" lectures run concurrently. The scientific ones are about bench research and the presenters are research scientists talking in their research science language. That is not to say you have to be a PhD or MD to get something out of them but it is serious, complicated science with a lot of information packed into each session

I did not go to many of the clinical sessions, they were more about patient care

Have a look at the abstracts from last year to see what it might be like http://www.tandfonline.com/toc/iafd2...1?nav=tocList&

If anyone is coming please let me know!

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Old 06-08-2017, 03:57 PM #4 (permalink)
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Default Re: Patient Fellows Program at International Symposium on ALS/MND in Boston, USA

Thanks for letting us know Robert, and Nikki so glad you could report on what these symposiums are actually like - hope you have a great time there!
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Old 06-08-2017, 05:07 PM #5 (permalink)
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Default Re: Patient Fellows Program at International Symposium on ALS/MND in Boston, USA

No argument, symposia are important. The "Fellow" program is what I was commenting on.

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Old 06-08-2017, 06:36 PM #6 (permalink)
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Default Re: Patient Fellows Program at International Symposium on ALS/MND in Boston, USA

I don't see TDI is advertising themselves as sponsors though they do seem to be financially administering and some of the selection committee are connected to them in some way.

Maybe I am missing your point Laurie. The goal seems to be to allow some PALS to attend an expensive conference and in return they need to be able to blog, post or otherwise share their experience. Given that one of their goals is a diverse collection of PALS in disease state and background measurable objectives may be hard to state as abilities, by design, will vary.

This won't be for everyone. It is a pretty strenuous 2.5 plus days even if you just attend the podium sessions. Add in the poster sessions and the days are really long and as I mentioned before you exercise your brain quite a bit.
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Old 06-08-2017, 07:58 PM #7 (permalink)
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Default Re: Patient Fellows Program at International Symposium on ALS/MND in Boston, USA

Thank you for posting the abstracts Nikki. It sounds like something I would enjoy going to if circumstances allow. Maybe I will see you there. Kate
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Old 06-08-2017, 08:16 PM #8 (permalink)
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Default Re: Patient Fellows Program at International Symposium on ALS/MND in Boston, USA

Let me know if you are going. I would love to see you. Here is the information https://www.mndassociation.org/resea...m/boston-2017/

Not cheap as you can see and more expensive later registration. It makes it hard when you can't plan ahead
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Old 06-09-2017, 11:21 AM #9 (permalink)
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Default Re: Patient Fellows Program at International Symposium on ALS/MND in Boston, USA

Laurie

Eeek! I'm sad you see it as "window dressing" for ALS TDI. The goal to add more people with ALS into the meeting AND to get them to express their voice after the meeting. The Selection Committee will work with Fellows not only to get access at the meeting, but importantly to help Fellows get their voice and impressions out there during and after the symposium. A group of private donors sent money to ALS TDI who will use that money to pay for registration and accommodation and food for Fellows...that's our only role in it. Fellows dont have to be affiliated with ALS TDI in any way otherwise - heck, they can entirely disagree with ALS TDI on everything we do...that's fine! The point is about increasing patient voice. That's it. I should note that the Chairman of MND Iceland and the Chairman of ALSA National are on the Selection committee, as well as a Board Member of Team Gleason and Answer ALS, and a VP from PatientsLikeMe. There are three people with ALS on the Selection Committee, one former care provider to a person with ALS, and one current care provider to a person with ALS. I am the only person on the committee that either doesn't have ALS themselves or has or is caring for a person with ALS. I could remove myself from the Selection Committee altogether I guess, but since I personally believe in the goals of the Fellows Program, I'd like to see it through for this first year at least...then, I'm happy to step away entirely.

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Old 06-09-2017, 11:45 AM #10 (permalink)
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Default Re: Patient Fellows Program at International Symposium on ALS/MND in Boston, USA

Thanks for posting this info, just the link to the abstracts is fantastic!

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Old 06-09-2017, 11:52 AM #11 (permalink)
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Default Re: Patient Fellows Program at International Symposium on ALS/MND in Boston, USA

Rob, I personally see no reason for you to step away. I am grateful to the donors who are giving money for this as it is an expensive proposition

Jenn if you explore the mnda site and look at the symposium information you can get links to earlier abstracts. There was quite a lot about c9 at 2015 that would likely interest you particularly
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Old 06-09-2017, 04:04 PM #12 (permalink)
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Default Re: Patient Fellows Program at International Symposium on ALS/MND in Boston, USA

Rob thank you for what you are doing - please know that the majority appreciate it greatly! Also thanks for taking a moment to explain that.
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Old 06-25-2017, 05:26 AM #13 (permalink)
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Default Re: Patient Fellows Program at International Symposium on ALS/MND in Boston, USA

Sorry I missed this earlier. I've been off the grid for a few weeks.

I personally think that this program is extremely important.

The International ALS MND symposium is an old-school scientific/academic symposium. Topics covered are broad and deep. Many scientific announcements are released around this symposium and it's the big venue for scientists working on all aspects of ALS.

I have attended at my own expense for the last three years. I have known a few people who ALS who have gone at their own expense.

The substantial registration fee itself does not make it easy for people with ALS to participate (the symposium even charges for a caregiver accompanying a person with ALS). That's a problem that I am glad is being addressed with this program. People with ALS don't need such barriers between them and the science, and the presence and participation of people with ALS should be embraced at every ALS scientific meeting imo. People with ALS need to be there if they want to be there.

I am glad that ALSTDI stepped up to help coordinate access to this symposium for some people with ALS via this program. It's a big step forward to include people with ALS in the scientific discourse.

And the lens of the person with ALS reporting back news from the symposium will be enlightening for all.

There are people with ALS and caregivers who are interested in the science and who are perfectly capable of grasping the science and being part of the conversation. Researchers and symposia that don't embrace them are missing the boat. I hope that this is a first step in fixing that.

My few cents.
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