Raising Hope: Amanda Jackson

Welcome to our inspiring blog series, Raising Hope, where we feature stories of individuals who are making a difference for the autoimmune community through giving. From the heroes behind DIY fundraisers to dedicated long-time donors, Raising Hope recognizes the people who help propel our mission forward by donating or raising funds to support our programs. This series offers a glimpse into the journeys, motivations, and moments that drive them to give to the Autoimmune Association.

In November 2022, Amanda Jackson was diagnosed with Sjögren’s, a complex autoimmune condition where the body mistakenly attacks its own mucus membranes, causing a range of difficult symptoms, including dry eyes and a severely dry mouth, among others. As a professional musician, Amanda knew this diagnosis could have a profound impact on her ability to sing. She vowed to learn as much as she could about the disease, and discovered just how many people are living with Sjögren’s and other autoimmune conditions — many of which are invisible, causing people like herself to sometimes suffer in silence.
 
Amanda, a singer, and her husband Charlie, a guitarist, are part of a local band in Dayton, Ohio called Avalon Park. Their involvement in the local music scene enabled them to connect with other performers who also live with autoimmune diseases, sparking an idea to use their platform for raising awareness. Last month, Amanda organized a benefit concert to support the Autoimmune Association, coinciding with Rare Disease Day on February 29, 2024, and Autoimmune Awareness Month in March 2024.

Leveraging her talent and the stage, Amanda created an event that not only raised awareness about autoimmune disorders but also highlighted the resilience of the band members, allowing them to continue pursuing their passions while living with an autoimmune disease. She transformed her singing into a means of generating both funds and awareness for the cause. The concert featured three bands, comprising nearly a dozen performers connected in some way to autoimmune diseases, carefully selected by Amanda.

In the time leading up to the concert, social media posts about it lit up with likes and loves. It helped to make Amanda feel supported in her autoimmune journey, much like when she first opened up online about her autoimmune disease. Additionally, each band spread the information about the upcoming show on their social media platforms, using primarily Facebook and Instagram for publicity. Amanda also works with a local production company who shared the event on their social media channels as well.

Held on Saturday, February 24, the concert attracted a large audience. Amanda informed attendees about the personal connection each performing band had to autoimmune diseases, enhancing the meaningfulness of the event. Despite struggling with symptoms of her Sjögren’s, which caused severe dry mouth and vocal strain, Amanda felt uplifted by the audience’s support and completed her performance strongly.

“It’s always a treat to go out and perform, combining this with raising awareness about autoimmune illnesses makes it even better. I’d absolutely do it again,” she said.

The biggest surprise for Amanda was when an audience member came up to talk to her after the show, and shared the autoimmune issues his wife and daughter face. He offered a personal donation on top of his ticket purchase, helping to bring the total fundraising amount to $400 for the Autoimmune Association.

Amanda’s benefit concert showcased the power of community and music in the face of adversity and the strength and resilience of individuals living with autoimmune diseases. By turning her personal challenge into a platform for awareness and support, Amanda demonstrated how passion and purpose can drive positive change.

Turn your own passion into purpose!

To help you every step of the way, from brainstorming an idea for a fundraiser, to setting up a web page to announce your fundraiser and collect donations, we’ve launched a new DIY Fundraising platform. We’ve made it easy for you to host your own fundraiser and raise awareness. Get started today!