Integrating the ALS Charity Landscape

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1.  ALS Charity Connection App

Based on learnings from our proof-of-concept tools, we would like to partner with leading ALS organizations to develop a robust app to connect with patients and families, as well as each other.   Charities should be able to update their contact, offering and eligibility information.  Patients should be able to engage with this information in an accessible and user-friendly way.  Depending on desired scope, the app could go as far as to facilitate inquiries, applications and referrals to other organizations - revolutionizing how the charity landscape works.

 

2.  ALS Charity CEO & Board Consultations

We've built the most comprehensive database on U.S. ALS organizations ever, spanning strategic, financial, service and geographic dimensions.  This information - and the insights it can yield - can help CEOs / Boards constructively challenge their leadership teams on performance gaps and identify future opportunities, such as merger candidates and expansion avenues.  We would be delighted to meet with you, always free with no strings attached, to discuss how to take your organization to the next level.

 

3.  Analysis - Underserved ALS Communities

From our work so far, we see numerous areas in the U.S. where state and county level charity offerings are weak or nonexistent.  We would like to pinpoint and illustrate where these deficiencies exist and offer suggestions on how the landscape could work together to address them.  No one should be without the support they need because of where they live.

 

4.  Analysis - PWLE Inclusion in Charity Governance and Programs

ALS organizations take different approaches when incorporating lived experience into their work.  Some have ALS patients as voting board members and some start PACs for targeted advice and perspective.  Some open their events to the community and some do this on a much more limited basis.   We want to showcase the organizations who do this well and make recommendations to others.

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Integrating the ALS Research Landscape

 

5.  Analysis - Research Grant Ecosystem

This one is a bit of a pipe dream - but it's worth putting out there.  We think it would be interesting to - with research community involvement - build a database of all ALS research grants including grantor, grantee, amount, focus area, etc.  From this we can see overlap and opportunity, concentrations and imbalances, and other valuable insights.  Our hope is that this transparency could inform ways to make research more impactful and efficient.

 

 6.  Analysis - Research Publication Trends

Cataloguing published ALS research along with citation details could provide a map for where research has been and where it may be heading.  Given the complexity and volume of data, our plan would be to leverage AI tools to assist with the categorization, relationship mapping and visualization of the data set.  This would require a partner in academia who is willing to help source the data, which is not otherwise available to us.

 

7.  Analysis - Clinical Research Trends

We believe that analyzing ALS clinical trials of the past, while depressing given the low success rate, could help identify trends and opportunities that may not be apparent to researchers who are deeper in the details.  Trial size and length, inclusion criteria, pathway targeted, sponsor size / properties and investigator are just some of the attributes we can look at.  This is another good use case for AI tools.