One thing a rare disease can rob families of is time. Time co-ordinating medical information and time that could be spent making memories. Ryan Sheedy was keenly aware of this which motivated him to find a solution to the problem. His app, mejo, allows parents and caregivers to collate and organise their child’s medical journey in one place and save that most precious of gifts: time.

RARE entrepreneur series: meeting the beating hearts behind the RARE brands

mejo was created by the Sheedy family whose son was diagnosed with an ultra-rare disease, Costello Syndrome. Developed to help parents and caregivers of medically complex children and children with rare diseases, mejo is a tool which helps to simplify, organize, and share your kid’s most important medical & care information all in one web app.

1.

What was the driving force in starting your own business in the rare disease space? Was there an unmet need you were responding to?

Our son Reynolds, and his diagnosis of Costello Syndrome, has opened our eyes so big to the rare community. I love spending time with my boys, my wife and family and really enjoy being a dad. What wasn’t as enjoyable was managing all of Reynolds’ medical and care information, filling out paperwork and repeating the same information time and time again to others caring for him. Time and energy spent on those things was time away from my boys getting ice cream or building forts or dressing up as adventurers hunting for dinosaurs, so I knew I had to find a better way. With mejo all the information is in one place. It’s easy to manage and I can share it in seconds. This means more ice cream + less paperwork which my boys agree is sweet.

2.

How does your business benefit the rare disease community?

mejo is a platform that allows the caregiver to tell their kid’s journey beyond their diagnosis and chart. It saves time. It’s free and it’s really easy to use.

3.

What advice, if any, did you get when setting up your business? Has there been anyone in particular who has been pivotal in supporting your business?

Simple is really hard to do. Have purpose. Stay 100% focused on being the best at one thing. Put care into every decision. Don’t change because someone says there’s a bigger audience over there. I was extremely fortunate to meet and bring on board a co-founder like Bret Koncak who pushes me/us to think like this. Not only does he bring 20+ years of healthcare IT experience as a former Cerner executive but he’s also a dad and caregiver of three kids (two of whom have been affected by rare disease). We make a great team.

4.

How do you manage the demands of running a business with your own health needs, those of someone you care for, or those of your employees?

One day at a time. I had the original idea for mejo four and a half years ago while sitting in the NICU with our son. My title is Dad, Caregiver & Founder. In that order. All three jobs make me better for each individual role. I wouldn’t be one without the other. There are some days I can’t get to everything. Mostly because I’m a stay at home dad of three boys and caregiver to Reynolds. And I’m OK with that. I also work during every free moment. I take every opportunity to chat with folks I meet. People are my purpose.

5.

What advice do you have for someone starting their own business?

Go for it. Be passionate. Buck the system. From the beginning you will hear from naysayers. “Its been done before.”  “This is why so and so failed.”  Trust your gut. Push forward.

6.

What are the most rewarding aspects of establishing and running your own business?

The people we get to meet and help. We initially built the mejo beta for us to use. Every day we hear from families who love and use mejo in their daily lives. It helps save time and provide some peace of mind.

7.

What would you consider to be the greatest achievements of your business thus far?

Hearing from early users how mejo has helped them. Being thanked for building a tool people have been talking about for years. Solving a problem that the big guys aren’t because they aren’t focused on the caregiver’s point of view. Giving time back to others so they can spend it with their families, not filling out paperwork.

8.

What advice would you give someone considering working in the rare disease space?

Get to know the people. Their communities. You can really help drive change and save lives. Working in the rare disease space allows you to bring awareness to this ever-growing population. Prior to our son getting his rare diagnosis I didn’t even know what rare disease was.

9.

What are your hopes for the future of your business?

We are working hard to be able to offer mejo globally (currently it is only offered in the US) and become the universal medical and care “face sheet” that is accepted everywhere. Through our platform we are starting to really humanise medical data. Give the patient a voice. Tell their story beyond their diagnosis.

10.

If you hadn’t founded mejo, what was Plan B?  What did your 10-year-old self want to be?

Hmmm. Great question. I always wanted to be a fighter pilot. There’s something about flight that has intrigued me. Going fast. Maybe one day I’ll learn to fly. For now, I have enough to learn and do that keeps me grounded.

I often refer back to this quote which is: “You treat a disease, you win, you lose. You treat a person, I guarantee you, you’ll win, no matter what the outcome.” – Patch Adams