After years of tests, after countless of late-night WebMD searches, and a sea of referrals … after hours on the phone with insurance companies and payment plans. After all of that. That is when you FINALLY receive the words: We think your son has a rare condition.

And just when you thought you would get answers. That — for patients with rare and orphan conditions — is only where your journey begins.

At least that is where the journey began for Monica Weldon, our guest for this episode of Rare Voices.

Monica was able to absorb those words and the emotional roller coaster attached to them and create a network of support and a vision for what advocacy can mean for patients with rare and orphan conditions.

In 2014, Monica founded Bridge the Gap: SYNGAP Education and Research Foundation. While most patient advocacy groups focus on an illness, Monica focused her foundation on the research involving a rare gene mutation. As a result, she has been able to build a coalition with other advocacy groups, research institutions, and, most impressively, with manufacturers.

Today, Monica is a force for change in patient advocacy, an author, and keynote speaker at countless conferences even beyond health care. I’m excited to bring you her story during National Caregivers Month, because, most importantly, Monica has redefined what it means to be a caregiver with what she has accomplished on behalf of her son, Beckett.