Meet Dallas Regional Leader, Tiffany Lievanos whose son suffers from Minimal Change Disease. Learn how she is working to help kidney kids understand the importance of their diet and how she is empowering other volunteers through the local events in her community. You can connect directly with Tiffany at email@example.com.
What’s your personal connection to NephCure?
My now 3 year old son, Owen, was diagnosed with Nephrotic Syndrome/MCD two years ago. I was searching for answers and more information about the rare disease that shook my world. I came across a Facebook group for parents of kids with Nephrotic Syndrome and several families pointed me to NephCure. I reached out and quickly became a part of the NephCure family. I started listening in on calls and once I felt comfortable, I started getting more involved. Before I knew it I was leading the NephCure community here in Dallas. It has been such a joy to lead, follow, and connect with other families through NephCure.
Why do you volunteer with NephCure?
I volunteer with NephCure because it makes me feel like I am being proactive in my son’s fight against kidney disease. When it comes to living with a rare disease, there are so many unknowns and that constant feeling of “I have to do something” from a parent’s point of view. We channel a sense of a protective nature in order to protect our child from this disease and the course of treatments that comes with it. I suppose it’s the mama bear in me that wants a little control—a little control that can certainly go along way as we make strides in awareness and better treatments.
When I started volunteering it pulled me out of a dark place of feeling alone and unheard. Volunteering was my outlet, a chance to be a voice, to create a hope for other patient families, and to be the support that I once needed and still need to this day. What keeps me committed, other than the fact that I won’t stop until there is a cure for my son, is the empowerment and love that comes with it and shines through it!
Volunteering was a big part of my upbringing and the impact that it had on me as a child which was making a difference in other people’s lives has never left me. I love to help others! Being a part of the NephCure family is such a gift to me and my own family. Being a NephCure leader is a superpower that I know I can utilize and make a difference!
What projects are you working on right now? How do they make you feel?
I am currently working on a couple projects at the moment. While community development is my main focus, I have started working on sub-projects to capture my patient families engagement and hope to provide the families and kidney kids with supportive tools that bring us all together as a community.
We recently launched Kooking Kidney Friendly with Keyaira and Sous Chefs a kids virtual cooking class. I hope this becomes a new way for patient families to share low sodium recipes with each other and a fun way to get our kidney kids included in our community. I feel like its important for our kids to grow up knowing and truly understanding their dietary needs, so that they can make conscious meal choices themselves and feel good about it!
Looking ahead, I have a Dallas Pig Jig scheduled for October 2021, and currently brainstorming a formal dinner party for early 2021 should Covid allow. Planning these events makes me feel productive. Event planning has always been something I have enjoyed and knowing its to make a difference in my child’s future makes it all the more empowering.
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