The Decade that Was

The eve of a new year is a time for reflection. When I look back on our lives at the end of 2009 I’m reminded of how carefree we felt. A long wished for grandbaby joined our lives, dreams we would hike the Grand Canyon from rim to rim together, crawfish boils, Halloween parties, vacation trips, outdoor adventures camping, and hiking. Life was a nonstop activity. 2019 find us saying goodbye to the decade that was.

A decade that began filled with promise is ending with changes so profound, if someone had given me a peek into the future, I would have never believed.

It’s ironic this new decade begins with 2020. Our road ahead may be bumpy but we are determined to tackle this new year with 20-20 vision. 2019 is ending with so many new possibilities I am feeling hopeful once again. The vision for Living with Superficial Siderosis was always to go big but the reality is big dreams are hard if you’re going it alone. Meeting Kyle, Sue, and Mackenzie have reignited the fire.

We each bring uniquely complementary strengths to this alliance. When you add in our volunteers and medical research group I can see real progress on the horizon. Yes, research takes a long time, but we stand together with a clear vision and tangible goals. 2020 might just be the first step towards fulfilling the dream but make no mistake- we plan to make every year in this new decade count.

We will be sharing these goals with everyone over the next weeks and months. Good planning is always the key to success. Dr. Levy and his research group are standing by, at the ready. It’s up to ALL of us to provide them with data, and funding, whether it be through the generosity of donors, applying for grant monies, or volunteering.

I promise to work hard every day and in return, will ask for your help every step along the way. I am no longer alone.

We are the Superficial Siderosis Research Alliance and together we will #MakeItHappen.

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Rori Daniel

Living With Superficial Siderosis began as a way to keep family and acquaintances updated after my husband Gary was diagnosed with Superficial siderosis in 2014. In 2019, became a partner in the Superficial Siderosis Research Alliance. Together our alliance has expanded into research, advocacy, and patient education. Rori Daniel, Editor,

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