Having received life-saving treatment himself, for a rare form of brain cancer, Rob Long very much sees ​his position as CEO of Uplifting Athletes, as paying it forward to the RARE disease world. He talks to RARE Revolution about the incredible opportunities for research his organisation provide and the challenges, and indeed possibilities, the current worldwide pandemic is offering

CEO Series: meeting the beating hearts behind the RARE brands

1.

What made you want to move into the wide world of rare disease, and then specifically Uplifting Athletes and what did that journey look like? 

Like many of us, I was unwittingly thrust into the wide world of rare disease with my diagnosis. In December 2010, I was diagnosed with a rare aggressive form of brain cancer. My MRI revealed a mass nearly the size of a tennis ball. My teammates on the Syracuse University football team rallied in support of me and established the Syracuse University Chapter of Uplifting Athletes in my honour. After almost a year and a half of treatment, I had my first clean MRI. In that time, I had become fully involved in supporting the Syracuse Chapter of Uplifting Athletes. In 2016, I reached out to our Founder Scott Shirley and he provided me with an opportunity to join the Uplifting Athletes organisation full-time. In October 2018, I was selected as the next Executive Director of Uplifting Athletes.

2.

What do you anticipate will be the biggest challenges and opportunities for your organisation in the next two years?

​It’s amazing how quickly things change. The challenge that we are facing now is how effectively we can pivot from cornerstone fundraising events, and their reliable revenue, being cancelled to establish a new way to engage our audience and donors. We were on a tremendous growth trajectory when the COVID-19 pandemic hit and we would like to find a way to maintain that.

​I also believe that these challenges provide opportunities to explore and try things that we may have not otherwise attempted to do. We have been forced out of our comfort zone as an organisation and it is inspiring some new creative ideas that will stick around long after the pandemic passes.

3.

What is your proudest moment in your career thus far?

Every day is really rewarding for me. I truly love what I do and know that I am in a position to have a positive impact on other human lives and I am so fortunate to have that opportunity. One of the highlights for me has been watching the evolution of our Young Investigator Draft initiative that elevates, and funds, up and coming researchers in the rare disease space. In May, we received word that one of the researchers that was selected through the Young Investigator Draft, Dr. David Fajgenbaum and his team, had used funding from our grant to discover parallels in the body’s immune response in Castleman Disease and COVID-19. I was so proud to be able to support timely and impactful work. It was also proof of that by funding rare disease research, the discoveries that we make translate in so many ways for those affected by more common diseases. 

4.

What and who are your personal and professional inspirations and why? 

​There are a lot of people who have helped me tremendously along the way. One of the people that we work with here at Uplifting Athletes is John Trzeciak. John is a volunteer business advisor for us and has been a mentor from a business standpoint. Jean Campbell on the rare disease side has been a mentor with engaging the rare disease community. Jean is a 30-plus year veteran of the rare disease space and has worked with NORD and several advocacy organisations. Personally, I have countless people that have shaped the person I have become but it all started with my parents. I am lucky to have had their guidance and support from day one.

5.

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

​Do it. Simply put this community is incredible. I have met more uplifting and inspirational people in just a couple of years than most people have the chance to meet in a lifetime. The motivation for progress is constant and the opportunity to have an impact is endless. 

6.

Do you think the government does enough for the rare disease community at a local and central level, and what gaps do you see currently or emerging?

​I do believe that the government has supported and driven progress in the rare disease community. If you are asking if it is enough? I don’t think we can do enough until we find therapies and cures for the more than 95% of rare diseases that do not have an FDA approved treatment. They are doing something, but I think there is always the desire for more until we can help all those affected by rare diseases. 

7.

What would you say are some of the biggest motivators for your employees? 

​The biggest motivators are seeing the results of the work that we do. Whether it is getting a chance to empower an athlete with the knowledge of how they can support the rare disease community, meeting the researchers who we are fortunate to fund, or seeing the look on a patients face when they get to visit their favourite NFL team, it is the people that motivate them. 

8.

​What are the toughest parts of being a CEO, and conversely what are the most rewarding?

The toughest decision is to stay completely focused and committed to our mission and strategy so that we can use our core competencies as an organisation to provide the biggest benefit to the rare disease community as a whole. It is hard to not jump at opportunities as they arise, but we need to stick to the plan and process that we have developed. Unfortunately, that means not always being able to help everyone all the time which can be frustrating.
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The most rewarding part is that I am a product of the research that we aim to support through the Young Investigator Draft. I am alive today because of the time, resources and money that were directed at finding a therapy years before I was ever diagnosed. I won’t be able to meet all the people that made that research possible, but I can wake up every day and pay it forward in hopes of having a similar impact one day in the future.

9.

What would be your one wish for Uplifting Athletes for the year ahead?

With all the uncertainty amid the global pandemic, my wish is that Uplifting Athletes can remain on its growth trajectory that we were on prior to the global pandemic. I think this organisation has so much potential to have a significant and lasting impact on the Rare Disease Community.

10.

​If you weren’t CEO of Uplifting Athletes, what was Plan B?  What did your 10-year-old self want to do as a job?

​As much as I would never change my past because it has shaped the person that I am today, I would have loved the opportunity to have played in the NFL just for the experience of it. I came so close, but the timing of my diagnosis couldn’t have been worse for my prospects of becoming a professional athlete.