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.

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 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;

4. 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:

1. 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.;

2. Prospective applicants are encouraged to arrange a feasibility consultation with representatives from the GLIA-CTN prior to submitting an application;

3. 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.