We’re thrilled to introduce Veterans Advancing ALS/MND as the winner of the Collaborate | Innovate Challenge! Veterans Advancing ALS/MND identifies opportunities in ALS research by testing efficacy of therapies within ALS patient subgroups and building an online forum for researchers and patients to interact. The team was awarded $100,000 and additional guidance from Sanofi to further their concept, aimed at bringing the patient voice into the drug development process.
The Veterans Advancing ALS/MND team consists of partnering organizations Innovative Solutions Consortium and the Robert Packard Center for ALS Research at Johns Hopkins University. Accompanied by veteran Richard Thiede and partner Steve Hunt of the Innovative Solutions Consortium, presenter Milan Karol of the Robert Packard Center for ALS Research delivered the team’s presentation at the Finalist Event in Bridgewater, NJ.
Karol outlined the team’s goal to accelerate the process of collecting and understanding cell pathways for members of the military to assess the suitability of existing drugs to delay or prevent the onset of ALS/MND, or slow the pace of the disease in various patient subgroups. He pointed out the shocking rates at which veterans are being diagnosed with ALS every day. Karol notes, “There is a clear and compelling need for action. The veteran community needs our help. The community within Operation ALS> will operate as a bridge between veterans with ALS and the many partners who are and want to be supporting this community.”
Veterans Advancing ALS/MND aims to take personalized medicine and customize the experience for veterans with the disease by screening to match ALS subgroups that are most likely to benefit from specific therapies – a mission with potential to significantly impact clinical trial design. Karol positioned the concept as a Soldier, Sailor, Airman or Marine’s “last mission” – an empowering opportunity for veterans to collectively contribute to a mission to aid research and development. The initiative combines the science of genetic analysis with the partnership in community building to enable researchers to draw connections and better identify research strategies, needs, and opportunities within the veteran ALS community. “Talk to any veteran – there is a great deal of affection and camaraderie built into this community. There is a built-in bond that will lead veterans to gravitate toward one another and remain a part of the mission,” said Karol of the veteran community and the promise held in the concept.
Veterans Advancing ALS/MND has proposed a three-pronged approach called Operation ALS>:
- Collection of Individual Bio Samples. Collection of simple skin biopsies from living patients for use in growing neurons and brain cells in the laboratory. The cells produced can be used for subtyping ALS to accelerate drug screening and drug discovery to support translational research.
- ALS: My Last Mission. Recruit veterans to contribute to the ALS Bioregistry (sponsored and in development with the CDC) and the Veterans’ Administration’s Brain Bank. The contributions will help further research efforts and initiatives.
- Operation ALS>. Gather veterans with ALS in an online support community on the Operation ALS> website, where they can participate in peer forums, engage with initiatives, collaborate with partners and doctors, and volunteer for human trials.
The team was mentored by the four functional expert mentors and Kathleen Coolidge, the Associate Director of US Patient Advocacy at Sanofi-Genzyme, during the Virtual Accelerator.
Thank you to all of the partnering organizations that submitted concepts to the Collaborate | Innovate Challenge, and to the judges, mentors, patient advocacy community, and everyone else who played a role in the success of Collaborate | Innovate. We hope that the Challenge will continue to inspire patient advocates to share ideas and knowledge toward open working relationships and innovation within the greater healthcare ecosystem, driving the development of impactful and meaningful solutions that empower the patient.
Missed the Finalist Event? Watch the recorded webcast here.