advocacy
champions

Champions

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This past year has certainly been an experience as we learned to navigate the waters of virtual events. Everyone is disappointed there will be no banquet this winter, but we hope that 2021 turns the corner so we may again safely enjoy your company. Expanding our 5k fundraiser to include the entire world as a virtual race and transitioning our Silent Auction to an online event has shown we can persevere, no matter the obstacles.

Thank you for participating in the SSRA online auctions. We are thrilled to have your support. Through your donation we will be able to continue our medical research for Superficial Siderosis and continue working towards seeking, raising, and providing funding in support of medical research for the benefit of the world community affected by the neurodegenerative disorder superficial siderosis. You truly make a difference for us, and we are extremely grateful!

Our 2020 online auction raised $4,602. If you have specific questions about our organization as a whole, or are interesting in being an advocate, having your own fundraiser for SSRA, or donate an item for our 2021 online auction please don’t hesitate to reach out.

Sue Dempsey, Event Coordinator

Our Research Pledge is why The Dempsey Family Challenge Match is so important. The Dempsey Family Challenge Match donation we receive not only funds our organization’s overhead expense but will now help provide small travel stipends. Two SSRA advocates will have the opportunity to be awarded a travel stipend to help defray the cost of attending Rare Disease Week on Capitol Hill, July 2021. Additionally, the SSRA will award four travel allowances to help patients and caregivers attend a fall 2021 Superficial Siderosis Symposium in Boston. Covid concerns derailed our 2020 symposium event planning, so we remain hopeful it will happen in 2021.

The SSRA is proud to pledge a 100% allocation of donation proceeds will benefit research

Kyle Dempsey. President

The SSRA has been blessed by committed business support through their continued donation of services. These donated services have been instrumental in helping the SSRA keep our overhead low. Every one of these businesses is an unsung hero.

If you are on the fence towards taking the first step towards becoming a Champion Supporter, let us repeat our pledge. Your annual Champion Super Supporter commitment is 100% allocated to research. All donation proceeds through our online portal, fundraising events, giving campaigns, or direct giving supports research.

To our active Champion Supporters, the Superficial Siderosis Officers and Board Members would like to thank you for your commitment to the Superficial Siderosis Research Alliance organization and mission. 2021 marks the beginning of a new phase of research. These projects could not happen without you. We ask that you take a moment to renew your annual commitment as a Champion.

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