Patients, Caregivers Asked to Help Adira in Choosing Grant Awards

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by Shayna Korol |

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The Adira Foundation is inviting people with neurodegenerative diseases and their caregivers to join a grant proposal review committee.

A nonprofit foundation, its mission is to unite people affected by some of most common neurodegenerative diseases — namely, multiple sclerosisamyotrophic lateral sclerosis, Alzheimer’s disease, Huntington’s disease, and Parkinson’s disease — to improve their lives.

Through each grant proposal review group, Adira plans to actively bring patients and their caregivers together to better understand their shared needs and concerns. A committee will review and recommend “grantmaking activities so that the programs we fund respond effectively to what matters most to people” living with by these diseases.

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Selected reviewers will be paid $1,000 for their time and expertise, according to information provided by the foundation in an email exchange with BioNews Services, which publishes this site.

The overarching goal is “to work toward a consensus of priorities set by people dealing with the diseases and their consequences,” its states in the release.

Applicants must be 18 years or older, be a member of one of the five disease communities that Adira serves, and be able to participate in grant proposal evaluation activities, including attending online, virtual meetings. Committee members will gain proposal review skills, connect with others affected by neurodegenerative diseases, and learn about programs and organizations that support these communities.

Technology assistance is available to those needing it, and people interested should ask about the foundation’s “technology resources” when applying.

In total, each committee will have 11 members: five people who live with a neurodegenerative disorder or act as a caregiver to someone who does, five experts — those with professional experience in serving neurodegenerative disease groups — and one chairperson with both personal and professional experience with neurodegenerative disorders.

Committee members will need to make a monthlong time commitment, and onboarding will begin in October. Participants will attend a virtual training session, and a virtual introductory session to meet the experts serving on the committee. Both sessions are expected to run for about one hour.

Over the course of October, reviewers will read and provide feedback on eight to 10 grant proposals. This is estimated to take between 15 and 20 hours.

In November, all committee members will attend a virtual review session in which final grant recommendations will be considered and made. Expected to take about six hours, this review session may take place over two days.

Finally, all will be asked to take a short, post-participation survey.

To apply, join Adira’s Sounding Board and select “Adira’s grantmaking activities” from among the list making up question No. 9. You can also send an email to Lauren Ruiz, the programs manager of Adira Foundation, at [email protected].

According to Ruiz, there is no set deadline for applications. Adira will stop considering applications for this round once they have filled the “six committee slots and selected two to three alternates,” Ruiz said.

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