FY27 GLIA-CTN Advocacy Advancement Award

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. Award criteria were defined in deliberately broad terms in order to accommodate the diverse and evolving needs of individual leukodystrophy communities.

A full-length copy of the RFA is available for review here.

Applications will be accepted on a rolling basis.

Up to two (2) 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.

Support will be provided for a six (6) month project.

Awardees will receive up to six (6) months’ worth of in-kind support from the GLIA-CTN, including regular virtual meetings and email correspondence with the assigned administrative and/or technical contacts within the GLIA-CTN.

Any registered 501(c)(3) nonprofit organization focused on promoting awareness, research, and/or fundraising for leukodystrophy research is eligible to apply for the GLIA-CTN Advocacy Advancement Award.

Eligible applications will meet the following key criteria.

1. The application must relate to a specific established leukodystrophy (Vanderver et al., Mol Genet Metab. 2015; doi: 10.1016/j.ymgme.2015.01.006);
2. 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;
3. The applicant should be willing to meet with the GLIA-CTN Biomedical Informatics and Statistical Core (BISC) on a monthly basis for the duration of the 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 at a mutually convenient time;
4. The applicant must be willing to speak about their project at a virtual 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.
• Preference will be given to applicants who consulted with technical representatives from the GLIA-CTN prior to submitting their initial application.

Successful applications will include an institutional letter of support outlining matching funding and resource allocation for the creation of a Leukodystrophy Center. Please see Eligibility Criteria above for details.

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. A description of each Core Group’s scope of work is available here.

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.

The GLIA-CTN Executive 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

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 GLIA-CTN 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?

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.

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 regarding the application requirements, submission guidelines, etc. may be directed to GLIA-CTN Administrative Director, Omar Sherbini, MPH at email@theglia.org or 215-590-3068.