Our Strong and Rare Journey
A mama into civic action
When I joined the RDLA – I had no idea what I was doing to say the least. All I knew was that I needed to advocate for my children because all the research I had done about each rare condition, SD, SFS, and PE, was incredibly rare. I took part in what is known as Rare Across America, which is organized meetings for rare disease advocates with a member of congress and /or their staff with the Member’s in-state district office.
In the meetings, I shared our rare disease journey and the importance of taking action on policies that support our rare community. One of the policies we were asking for support for was Newborn screening (To learn more, visit HERE). The experience was powerful, and it is still now because every voice matters.
Story Behind the Podcast Name
I believe that everyone has an empowering story. We can all take a stance in being a voice for our children, or if you are living with a rare disease, you can be the change our community needs. Remember always that your voice matters.
Letting go of Expectations
If you are a parent like me, you know how much strength your children bring you. If you are a rare patient, you have also built on your muscles of strength to overcome all of the obstacles that have come your way. We also share the love and understanding of our rare journey. Although we might feel like our rare journey is small, we are all a community and can support each other no matter the distance. We are all One family. My last thought is that we should continue to raise our voices and take action to be the change we need to see worldwide for our rare community.