Our Journey Begins

Some say we’ve taken on an impossible task. Tilting at windmills. You’ll never raise the funding. Do you honestly think you’re going to bake sale your way to a cure? My answer is our enemy is real, and it has a name, Superficial Siderosis. We have clear goals; discover a way to stop the progression for everyone, including those who are not able to undergo chelation and find a pathway to healing. It seems fitting our journey begins in earnest this Rare Disease Week.

We haven’t shared the faces of those in the later stage of this disease. Bedridden, completely deaf, unable to care for themselves, or verbally communicate, the end-stage is not pretty for those who are severely affected. Some will progress into dementia. It’s a blessing some will not face this future. New research will make this end-stage a thing of the past for everyone diagnosed with superficial siderosis.

Dr. Levy is still getting settled into his new research home with the Mass General Research Institute. Kyle and the entire Dempsey family will be welcomed for a facility tour tomorrow morning. Massachusetts General Hospital operates the most extensive hospital-based research program in the United States with a budget of over $1 Billion.

We are very proud to host the nation’s largest hospital-based neuroscience research program. Our greatest asset in achieving our research goals is our faculty, several of whom serve on NIH councils and lead major disease consortia.

The Mass General Office of the Scientific Director is charged with promoting research, building partnerships with industry, and engaging with philanthropic donors. This doesn’t mean our work is any easier, it means we are no longer alone. A strategic partnership with the best of the best is how we will succeed.

The SSRA will soon introduce our newest volunteer, who will assist us in identifying grants and writing the applications. David has raised millions of dollars, consistently setting new fundraising records, and ranks among the most accomplished corporate fundraisers in Boston’s NPR News Radio Station WBUR history, placing him at the high end of the 90th percentile nationally. He received his Grant Writing Certificate from the University of Massachusetts, Boston. Strategic partnerships are how we will achieve our goals.

Never dismiss the power of a good bake sale, T-shirt, or Facebook fundraiser. I know you may need a break from our constant efforts, but please keep in mind every social media share puts our cause in front of fresh eyes. This local effort on your part for the SSRA adds up to brochures, supporting symposiums, educating physicians, and, most importantly, funding SSRA research grants.

Follow the SSRA this week on Facebook, Twitter or our website as Kyle and his family represent us on Rare Disease Week on Capitol Hill. We have exciting news to share on Monday, February 24, 2020. News you helped make possible.

We need partners, supporters, and volunteers.

We need you.

This is how we begin our journey. We want you with us at the end.