GLIA-CTN Advocacy Advancement AwardFY26 Request For Applications (RFA)
Award Purpose: The Global Leukodystrophy Initiative Clinical Trials Network (GLIA-CTN) is a consortium of institutions, clinicians, scientists, and patient advocacy leaders working together to promote advances in the diagnosis and treatment of leukodystrophies. The Advocacy Advancement Award is intended to serve as a mechanism for patient advocacy leaders to answer concrete questions relevant to their own constituents by leveraging shared data, expertise, and resources available through the GLIA-CTN.
Application Deadline: Applications will be accepted on a rolling basis.
Number of Awards: Two Advocacy Advancement Awards will be granted annually, with a new project starting every six (6) months. Additional awards may be granted during a given fiscal year at the discretion of the GLIA-CTN Executive Committee, and as permitted by available resources..
Funding Period: Support will be provided for a six (6) month project.
Level of Support: Awardees will receive up to six (6) months’ worth of in-kind support from the GLIA-CTN, including at least one (1) monthly virtual meeting with the assigned administrative and/or technical contact(s) within the GLIA-CTN, supplemented by email correspondence.
Eligibility Criteria: Any registered 501(c)(3) nonprofit organization focused on promoting awareness, research, and/or fundraising for leukodystrophy research is eligible to apply for the GLIACTN Advocacy Advancement Award. Eligible applications will meet the following key criteria.
The application must relate to a specific established leukodystrophy (Vanderver et al., Mol Genet Metab. 2015; doi: 10.1016/j.ymgme.2015.01.006);
The applicant must provide a detailed explanation of how the project will support their leukodystrophy community, and, if applicable, describe how the deliverables may be translated into future research opportunities;
The applicant must be willing to meet with the assigned GLIA-CTN administrative and/or technical representative(s) on a monthly basis for the duration of the six-month award. Meetings will be used to share progress updates, discuss conceptual and/or technical challenges, and coordinate next steps of the project. Meetings will occur virtually via Microsoft Teams at a mutually convenient day/time;
The applicant must be willing to speak about their project at the GLIA-CTN Administrative Meeting following completion of their six-month award period..
Applications should also meet the following feasibility criteria:
The applicant must demonstrate that efforts have been made to evaluate project feasibility, including confirmation that of relevant data and/or technical resources exist within the GLIA-CTN, demonstration that the project goals are achievable within the six-month timeline, etc.;
Prospective applicants are encouraged to arrange a feasibility consultation with representatives from the GLIA-CTN prior to submitting an application;
While not strictly required, preference may be given to projects that promote collaboration across multiple advocacy communities and/or disorders, as well as projects focusing on broadly applicable outcomes (e.g., development of tools that can be easily repurposed in other leukodystrophies).
Resource Utilization: Applications that include a plan to leverage central GLIA-CTN resources in one or more of the following ways will be prioritized:
Use of existing demographic and/or natural history previously collected through the consortium’s central repository, known as the Myelin Disorders Biorepository Project (MDBP);
Collaboration with one or more of the following GLIA-CTN Core Groups.
Reporting Requirements: Standard reporting requirements include the following.
The awardee will share a monthly progress note with the GLIA-CTN Executive Committee. This need not be more detailed than a 2-3 paragraph email summarizing key advances, challenges, etc. relevant to the project. These updates will allow the GLIA-CTN Executive Committee to more easily identify opportunities to streamline the project workflow;
The awardee is expected to attend, and be prepared to discuss their Advocacy Advancement Award, at the GLIA-CTN Administrative Meeting following completion of their six-month award period.
Suggested Application Structure: The GLIA-CTN Career Development and Pilot Project Committee recommends the following application structure.
Project Proposal (2-3 Pages): Background, Approach (inc. Aims, Preliminary Data, Feasibility, and Methods), Project Timeline, and Future Directions
Organization Overview (1 Page): Advocacy Organization History, Leadership Structure, Disease Focus, Nonprofit Status (If Applicable), Research Activities (if Applicable), Fundraising Activities (If Applicable), Key Initiatives/Projects.
Review Criteria: The following criteria will be considered during the review process.
Does the application meet the eligibility requirements?
Have efforts been made to assess feasibility through consultation with GLIACTN technical leaders?
Are the aims well-defined? Are data and/or tools currently available through the GLIA-CTN answer the stated aims?
Has the applicant demonstrated how the project will advance knowledge within their leukodystrophy community?
Can the project be completed within the standard six-month award period?
Review Process: All applications will undergo the following two-stage process.
Applicants will submit a first-round application for review by the GLIA-CTN Executive Committee. Feedback will be provided to all applicants.
Applicants with strong proposals will be invited to incorporate the Committee’s feedback and submit a revised application for a final round of review.
Disorders/Topics of Interest: Proposals focused on the following key areas will be given priority during the review process: Defining burden of disease for a specific leukodystrophy, developing disease-specific educational materials, expanding the existing interactive dashboard to include new leukodystrophies and/or new domains not currently represented, or generating basic summary data to support upcoming FDA interactions such as Patient Listening Sessions and/or Patient-focused Drug Development (PFDD) meetings.
Questions: Questions regarding the application requirements, submission guidelines, etc. may be directed to GLIA-CTN Administrative Director, Omar Sherbini, at sherbinio@chop.edu.