HD
Change Champion
Heather Thurgood Wilmoth has been involved with Huntington’s Disease since her husband, Nathan, was diagnosed in April 2016. Heather has built an amazing support group in her local community, both online and in person.
“When Nathan was diagnosed, we felt really alone. We didn't know anyone like us so we began a social media page to find others in our state who were like us. Challenges have been disease progression. Just as it's hard for him to deal with the changes, it's hard to watch him have to go through but we persevere.”
She is excited to be a Change Champion for PicnicHealth to spread awareness about HD research & to have access to the timeline.
“We love the idea of having all of Nathan's health records in one place and we want to try to fight HD. Even if it doesn't help Nathan, his participation could help others and quite possibly our two children who are both at risk.”
Prepared for the 2 Percent
Marc’s journey with CAH shows his strength, family support, and how he overcomes challenges every day.
Maddox's Journey: Love, Challenges, and Advocacy in the World of CAH
Walking through life with salt-wasting congenital adrenal hyperplasia (CAH) brings its own set of ups and downs. For Taylor and her son, Maddox, it’s a path marked by sudden storms and sunny days, a mix of medical emergencies and moments of pure childhood joy. Here’s their story, told with the warmth and honesty that Taylor brings to every conversation.
Making a Difference: A Closer Look at Rare Patient Voice's Role in Research
In celebration of Rare Disease Month, we are thrilled to shine a spotlight on Change Champions, dedicated partners, and organizations making a lasting impact on rare disease research throughout the year. At the forefront of this movement is Rare Patient Voice, a remarkable resource founded with a singular mission – to provide patients and family caregivers a platform to be heard by actively participating in diverse research endeavors, including rare diseases.