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March 3, 2025

C-Path Q1 2025 Newsletter

As we step into this pivotal year, I’m honored to welcome you to this special edition of our...

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Thank you for helping us expand participation in this important work! We rely on people with lived experience of ALS to help ensure research reflects the needs and priorities of the community. Please use the form below to nominate someone whose experiences, perspectives, and interests may make them a strong contributor to an ALS Research Working Group. No scientific or medical background is required.

Name(Required)

First Last

Email(Required)

Is your nominee aware you are recommending them?(Required)

Select the appropriate reply

Yes

I am not sure

Which Working Group(s) would you like to nominate them for?

Select all that apply

Biomarkers & Natural History

COA quarterly

COA – DHTs subgroup

COA – Respiratory Function subgroup

COA – ALSFRS-R Statistical Analysis subgroup

Communications

Data Platform

Unsure

Why do you think this person would be a good fit for an ALS Working Group? What is their superpower?

If we contact your nominee, may we mention that you referred them?(Required)

Yes

If yes to the above, would you like to be copied on the initial outreach?

Yes

Anything else you would like us to know?

Thank you for your nomination!

Your Experience Can Make a Difference

Name(Required)

First Last

Your Relationship with ALS(Required)

Which best describes your connection to ALS?

Living with ALS

At genetic risk for developing ALS

Former caregiver or care partners of someone with ALS

Friend or family members or someone with ALS

No connection

Prefer not to say

Other

If other, please explain:

What interests you most about participating in a collaborative ALS Research Working Group?(Required)

Which ALS Research Working Groups(s) are you most interested in?(Required)

Select All that Apply

Biomarkers & Natural History: understanding disease progression and biological measures of ALS

Clinical Outcome Assessments (COA): Improving how ALS is measured in clinical trials and beyond

COA ALSFRS-R Statistical Analysis group : Standardizing analysis and interpretation of ALSFRS-R

COA Respiratory Function group : Standardizing measures of respiratory function

COA Digital Health Technologies group: Exploring digital tools for ALS research

Data Platform: data sharing, integration, and analysis

Communications: community outreach and dissemination: Lived Experience Working Group

Lived Experience Working Group: Providing ad hoc advisory support to research partners

Unsure, but interested in learning more

Have you previously participated in ALS research before?(Required)

Yes

If yes, please briefly describe

Briefly describe your experience if yes from above

Beyond your lived experience, are there any skills, knowledge, interests, or professional experiences that you believe could be especially valuable to a working group? In the words of one advocate: what are your “superpowers”?

This information will not be used to determine eligibility, but it may help us identify the best fit among available opportunities.

Are you willing and able to commit a few hours per month to working group activities (most months)?(Required)

Select the appropriate response

Yes

Unsure

Is there anything else you would like us to know about you?

Optional

Thank you

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