Volunteer with PRRF!

The FAC engages families to develop a community of support for rare retinal diseases which includes social networking, education on PRRF research efforts, educational advocacy, grassroots fundraising, and assistive technology. Additionally, the FAC plans bi-monthly workshops, the annual connection conference and provides newsletter articles. Join the Facebook group here.

The Podcast Committee meets weekly to interview podcast guests, create a calendar of guests and topics for upcoming episodes, and identify ways to promote the podcast to various interested communities and groups.

This committee meets from May – October annually to plan the annual Hope for Vision Walk/Run. The event takes place virtually throughout the world with individual celebrations in local communities. The committee will assist with promoting the event, identifying ways to engage fundraisers, exploring fundraising opportunities and communications, and providing advice on overall event plans.

The RAC meets twice a year and as needed to provide ongoing support of laboratory initiatives; ensure the PRRF Board is engaged and aware of ongoing research initiatives; and network with the Oakland University community.

The PRRF Board of Directors meets monthly to provide oversight of all Foundation activities; fulfill fiduciary responsibilities; lead fundraising initiatives; and advocate as ambassadors for the PRRF mission throughout the local and global community.

Those who enjoy writing are welcome to create blog posts, newsletter articles, and donor communications. All article content MUST benefit or tie into the pediatric retinal disease community. Product or service advertisements are not permitted. Volunteers can offer articles on an ongoing basis or one-time only.

Are you an expert in a field that the rare pediatric retinal disease community would benefit to learn more about? We welcome workshop hosts that have topics of interest to our community. Workshop leaders are unpaid and cannot promote products or services in any way. All workshops must be informational only. If you’re interested, reach out to discuss your idea further. Credentials may be requested.

A few times a year we seek speakers that can provide a unique perspective or experience to the rare retinal disease community. Past opportunities include keynote presentations on assistive technology, navigating college as a person with low vision, and podcast interviews featuring experiences finding employment while blind or with low vision, and the transition from high school to college – and so much more. All speaking opportunities are unpaid and will be reviewed for the best platform.

One on-going goal of the FAC is to share reviews and recommendations for accessibility products and tools with our community. We are currently seeking volunteers interested in research available products & tools; testing them for use; providing an honest (unpaid) review; and sharing your experiences either in writing or on video. Products will not be purchased just for the test, therefore the volunteer must have access to the products already, know someone willing to let them try their product, or reach out to the manufacturer and request a sample for testing. FAC members will be available for guidance and assistance.

We are frequently asked to promote a community resource on our website and social media pages. We are seeking a group of volunteers willing to review the resources, as received, to determine the usefulness and accuracy of the resource before posting or sharing. Additionally, we would like to launch a Resource Hub for those effected by rare pediatric retinal diseases. Volunteers are welcome to provide guidance, suggestions and feedback on what resources would be helpful to those new and seasoned in their journey of living with a retinal disease.

We can always use help from eager and passionate fundraisers! Assist the Foundation with fundraising strategy, outreach to potential supporters and sponsors, and execution of annual fundraising campaigns.

If you’d like to host an event in your community or virtually, we would love to support your event! Review the fundraising event guidelines, submit an application, and review the checklist. We want to assist you in promoting your event, providing fundraising advice (if requested), and possibly providing PRRF materials for distribution at your event.

Do you like honoring donors and supporters by completing thank you phone calls, writing handwritten notes, and sharing updates on the impact of their gifts? Then, this opportunity is for you! Volunteers assisting with stewardship activities do not need to meet on a regular basis, they will work directly with the Foundation manager for tasks and updates.

We are always looking for individuals affected by rare pediatric retinal diseases to share their story. If you or a loved one is willing to share your journey, challenges, aspirations, and photos with the public, we would love to feature you as an Honored Hero. Sometimes stories are featured at our fundraising events, and other times stories are featured online.

We welcome anyone with a professional background in marketing and communications to assist our Marketing & Communications Manager with email campaigns, newsletters, collateral, flyers and more.

It is important to all rare disease communities to spread the word about the services available and important work being done to find cures. If you are interested in researching groups we can connect with, as well as making introductions or following up with outreach activities, let’s connect. We welcome your support!

If you are currently active on any social media channel, we are seeking social media ambassadors that will share our content, engage with comments on our pages, ask individuals and groups to like our pages, and promote content and events.

Coming up with engaging and relevant social media content specific to each platform is crucial to any social media strategy. If you enjoy creating content, finding great content to share, tracking post analytics, and testing various strategies, please reach out. We could use your help!

We are currently seeking volunteers that are willing to test our current tech stack for accessibility, inclusivity, and any features that need to be fixed or addressed.

With data hacks occurring daily, we would love someone experienced in cyber security to review our current security setup; advise us on best practices and necessary tools; and discuss ongoing security health activities.

If you are extremely detail-oriented and enjoy data entry, reach out to us. Familiarity with Salesforce, fundraising terminology, and best practices is a plus. We can always use help getting legacy data into our database, as well as keeping our files and information tidy. Must be proficient with computers, have basic knowledge of databases, and be comfortable working with electronic files.