Recently our Australian SSRA director Fiona stumbled upon an Instagram photo shared by another rare disease organization. It was a quote from a piece I had written over four years ago for the U.K based charity, The Silent Bleed. This was before Gary and I met Kyle, and an organization like the SSRA was an out-of-reach dream.

When I went back and reread the entire article, it hit hard. At this time, I was beginning my advocacy path, unaware I was about to start a journey that would prove every word I had written true. Everyone deserves to feel pride in the accomplishments of our superficial siderosis community and the Superficial Siderosis Research Alliance because it wouldn’t have been possible without everyone. When I share all we’ve achieved from September 2019 to now with other rare disease organizations they are always amazed.

I believe 2022 will be a breakout year.

A community has the power to believe; together, you can become a force for change.

The Power Of Community

reflections on community

Originally Published on The Silent Bleed 04.30.18

Fear is a powerful emotion. Anxiety shows no sympathy. Fear destroys if you give it power. A rare disease diagnosis, especially one as unknown as Superficial Siderosis, forces you to face your worst fears. It’s hard. We are not built to face fear alone. Thankfully, early patients and caregivers sparked the creation of our most powerful resource. Community

Your future has changed, so how should you plan? How is your family going to be affected? Where should you look for care?. Chronic illness brings countless unanswered questions. Yet, the very nature of superficial siderosis or any rare disease should make finding your community a priority. One person may struggle to search for answers, but there is an amazing well of knowledge waiting for your questions.

The wisdom of community is powerful


You’ll find your community happy to offer support no matter if you’re facing a new medical procedure, fighting through the pain, dealing with a new symptom, or need a safe place to vent. The power of community support can make you a warrior. Of course, being outgoing and vocal is not for everyone. Some members prefer to remain quietly in the background content to observe. That’s ok. A community has the power to be inclusive of all members.

Community has the power to effect change

Change in yourself. Change in others. Becoming a rare disease advocate was something I never imagined. Ever. I still wonder at how far outside my comfort zone I’ve wandered. Embrace this change.

A community has the power to make you believe in yourself


Ideas, suggestions, and research now have a place to be shared. Public and physician education becomes a common goal. Charities and non-profits form, all with a singular purpose. Discover a way to slow down or stop this life-stealing neurodegenerative disorder in its tracks.

A community has the power to believe; together, you can become a force for change. Believe in the power of community.

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