RARE Global Advocacy Alliance Member Spotlight: Sonny Mullen

Sonny Mullen

Organization Name
Help Hope Live

Disease Affiliation
All Rare Diseases

Organization Mission
Help Hope Live supports community-based fundraising for people with unmet medical expenses and related costs due to cell and organ transplants or catastrophic injuries and illnesses.

What led you to the rare disease community?

My younger brother, Tristan. 10 years ago, after 17 years of not having a diagnosis, we first heard the phrase GRIN1. Tristan has lived with many complications over his entire life but continues to show us what true grit looks like.  Once the GRIN1 diagnosis came in, we were slowly exposed to a small, but growing, worldwide community of families facing the same diagnosis. With the support network expanding, the CureGRIN Foundation formed. We continue to fight for each and every kid and family facing a GRIN diagnosis.  

What do you think are the areas that are lacking in the community (specific to your org or in general)?
There is one thing that I believe is lacking not just among organizations that offer resources but also across the disability community at large: cohesiveness, and a clear path to helpful resources. Every diagnosis and every individual living with that diagnosis may have a totally different experience and presentation. As a result, offering cohesive resources can be challenging—but that leaves already-stressed parents and family members with the task of seeking out other resources in their community. That can be hard to do with everything else they need to do in order keep their family member safe, healthy, and comfortable each and every day.

What are your areas of expertise?
My personal area of expertise is empathy. Growing up with my brother, I am able to put myself in a lot of our clients’ shoes and understand their frustrations. My empathy allows me to advocate on behalf of our clients and their families on a different level. Professionally, my expertise is in my ability to create solid connections with organizations and vendors, with my main goal always being finding new resources to share with our clients.  

Please describe any major milestones your organization has hit or has coming up that you are proud of.
2023 is Help Hope Live’s 40th anniversary!  I am so proud to work for an organization that has truly sustained the test of time and continues to grow. This nonprofit always puts the individual first, and our team is always striving to do more.  We just recently started assisting the rare disease community to fundraise for their medical expenses, and we are excited to learn more about what matters to rare disease families and how we can meaningfully provide support as we meet all of you!

What is your hope for the future for rare diseases?
My hope is based on something I felt at this past year’s Patient Advocacy Summit: I hope that more people start to understand that having a rare disease truly isn’t rare. I hope that the world around us starts to reflect the accessibility needed to accommodate this growing population. The rare disease community is thriving, and there is support waiting for you. Let’s continue to try to make it easier to find.