New Grief and Loss Series for Ask the Expert Podcast Announced

In December of 2023, SRNA announced a new series as part of the Ask the Expert podcast which would focus on grief and loss within the rare neuroimmune disorders community.  

Two episodes in the series have been released so far. Chris Lopardi, founder of the Miles for Mason Memorial Foundation, joined SRNA’s Krissy Dilger on the first episode to share about his family’s experience with acute disseminated encephalomyelitis (ADEM). In May of 2020, Chris and his wife Amanda lost their 7-year-old son, Mason to ADEM.  

“You have to do what’s best for you to help you get through the situation. For me personally, I leaned on other fellow dads that lost their children. They were mentors to me and helped me through the process. I started my own podcast with another grieving dad who lost a son, trying to bring some mental health awareness to dads that dealt with child loss and that’s helped me a lot in terms of coping with anniversaries or other dates. It’s really specific so to your loss and what feels right for you when you’re going through that loss.” shares Chris. 

After learning how to navigate life after Mason, Chris and Amanda started the Miles for Mason Memorial Foundation. Through their organization, they have made it their passion to help spread the word of what ADEM is and to help those affected by it. “There are good days, there’s bad days, good moments, bad moments, but you can definitely still live a productive happy life. You can laugh again. You can have fun again. It’s a little different, but it can happen again, and you have to be willing to get the help. And a lot of times for us like for myself, I really like helping others when they’re dealing with the same kind of stressors that we’re having.” shares Chris.  

You can read more about Chris and Amanda’s story here.  

In the second episode, Lisa McDaniel of The Guthy-Jackson Charitable Foundation (GJCF) shared about her family’s experience with neuromyelitis optica spectrum disorder (NMOSD). After the onset of NMOSD in her 5-year-old son, Collin, Lisa learned what it took to be a “Rare Mom” and fought for her son’s life.  

“You grieve for the life that you thought that child was going to have, the life that you thought your family was going to have, because it does change. In our case literally overnight, it changed. We were no longer able to attend every function for our girls as we had before. We were not at their band concerts, their cheerleading practices before, because we were pouring so much time into making sure Colin was at his doctors, that he had his treatments, that he was comfortable, that he wasn’t in pain.” shares Lisa.  

After Collin’s death in 2012, Lisa switched gears and went to work for the GJCF, where she is now the Director of Patient Advocacy. She now uses her extensive caregiver experience to help other patients and families living with NMOSD. Through GJCF, Lisa is able to engage with the NMOSD community to provide resources, information and education, as well as lead support groups and raise awareness of rare diseases through educational events. 

“I can guarantee you that the pain stays, but it changes, and it gets where you can bear it somehow. I don’t have an explanation for it. But learning to put yourself into something that can help take that pain and turn it into something positive or something good is the way our family dealt with it and got through it. And that’s not the way everyone does but however you do it, as long as it’s not harmful to you or other people, that’s okay. Whatever you’re feeling, that’s okay. Don’t let anyone tell you otherwise.” shares Lisa.  

Listen to Lisa’s full episode here.  

There’s much that could be said about grief within the rare neuroimmune disorders community.  While we know there’s no “easy fix” to its complexity, we try our best to provide sources of support to those experiencing its weight. Please know, no matter your situation, you are not alone.  

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