Through her own experience with the rare genetic condition, oculocutaneous albinism, Rebecca Rosenberg has created an app to aid those with moderate vision impairment. Rebecca aims to not only provide this often unseen community with independence, through the use of her assistive technology, but also with a sense of recognition and acceptance

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

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?

In some ways, ReBokeh started by accident. I have oculocutaneous albinism, a rare genetic condition that affects my body’s ability to produce melanin in my hair, skin, and eyes. Because adequate pigmentation is crucial to proper vision, individuals with albinism have vision impairments ranging from moderate to severe. For me, my vision impairment has always been moderate, and because I’ve had it since birth, I don’t know the world to look any different.

Growing up I really struggled to find appropriate vision assistive technologies because of my good functional vision. I needed more help than glasses were able to provide, but most of the assistive technology out there was really designed for someone with a more severe impairment. As a result, most of the things I was offered were too bulky, too complicated, and too expensive to be useful to me.

Fast forward to college, I was studying biomedical engineering at Bucknell University and received a grant from the College of Engineering to develop an assistive technology specifically designed for the moderate low vision community over a summer. The rest is history.

2.

How does your business benefit the rare disease community?

I think in the rare disease community as a whole, we get so used to being unseen, so used to needing to explain to every new person who enters our lives what our disease is and how it affects us. And in the case of moderate vision impairment, it’s also often invisible. So not only do we need to explain our condition from scratch, but we have to either bring it up ourselves, or respond to the ever too common “Um.. you should probably get your eyes checked,” whenever we have to look closely at our phones in public.

ReBokeh stands to remind the low vision community that they are seen, that they are understood, and that there is something out there created specifically for them.

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?

It is nearly impossible to get by as a founder without a solid support network. I have been incredibly lucky to have not only our advisors and mentors who have helped guide ReBokeh’s vision over the last few years, but also our incredible core team who have brought that vision to life through sheer determination.

As a female tech entrepreneur, I’ve definitely received my fair share of advice, and I think I can sum it all up (at least the good advice) quite simply­–survive. Take each day, each opportunity, and each challenge as it comes. Learn from the past, but leave it there–and don’t fear the future, it will never go the way you think.

Thankfully, there is no person more adept at survival despite all odds than a person with a rare disease.

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?

Truthfully, I am still figuring this one out. For the last few years, I was not only running my tech startup, but was also a full-time student getting my bachelors, and then masters degrees. It was a lot to manage, and very rarely did a day go by that I wasn’t failing at some piece of it. What helped me was that I truly had a passion for everything I was doing, for ReBokeh, and for all the work I put into my degrees. Taking the time to step back, acknowledge that I was taking on an impossible task and on average still succeeding, really helped me put things into perspective and show myself compassion when I needed it. I was also lucky enough to have some good advisors and friends who reminded me that coffee isn’t a meal.

5.

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

One thing that took me some time to learn, but really changed my world when I figured it out was this: at the end of the day, you have to trust you, because you are accountable to yourself first.

When I was starting ReBokeh I was inundated with advice–all from people much smarter and more successful than I was. Each person was just trying to help, and I had immense respect for all of them. But at the end of the day, I had to trust myself to make the final decision. I knew my company, and our beneficiaries, better than anyone else and needed to trust that I would synthesis all that advice, and make the best decision. But even more importantly, if something did go wrong, no one else was going to take the blame, I needed to be accountable to myself first.

6.

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

Before I started ReBokeh, I really hadn’t had a chance to get to know anyone else with a vision impairment, let alone albinism. Developing the ReBokeh technology has given me the opportunity to get to know so many others who share this life experience that for 21 years I thought I was alone in. Every time I’ve spoken about ReBokeh to someone in the vision impairment community I feel energised, and am more and more certain that we are solving a problem that truly matters to people. Not only because it provides them with independence, but because it makes them feel seen.

7.

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

Something that was really important to us was involving the user in the entire design process. And in our case, it wasn’t just the user, but also their doctor, their occupational therapist, their optometrist, and so many others involved in the low vision care pathway. We engaged all of these parties throughout the app development process and were able to add and adjust features in real time based on their feedback.

And after the successful completion of the beta release of the ReBokeh app, we are so excited that it is finally available on the iOS App Store for iPhone and iPad! You can download the app here.

8.

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

Working in the rare disease space has truly been the honour of my life. It is incredibly rewarding, but also places on you a certain amount of responsibility. As you get to know individuals with rare diseases, not just as “cases” or “patients,” but as people, you realise that you are uniquely positioned to do right by human beings who have in many cases been left to fend for themselves. It is a privilege to learn from the tenacity, the grit, and the sheer strength of these individuals. For someone considering working in the rare disease space, the best advice I can give is to make sure you are listening to them. Every decision should be informed by their lived experience. 

9.

What are your hopes for the future of your business?

What we are working on at ReBokeh, our overarching goal, is to change the narrative that people with low vision aren’t disabled enough to need help. And I think the first step toward this is to create a space that is uniquely for them. We see so often that blind and low vision are grouped together in community settings, but the experience of blindness is so different than that of the moderately impaired. We hope to not only teach individuals with moderate impairments to self-select out of those groups, but also encourage discussion around their unique experiences.

10.

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

Officially, my training is in biomedical engineering and medical device development, but a part of me has always wanted to work in high end special effects for movies. Whether that was on the computer science and graphics side, or focused on physical hardware and stunt safety equipment, I’ve always found movie magic fascinating! I spent some of high school and most of college working as a videographer and definitely used to think I could see myself going into engineering for film.