RARE Daily

Rare Leader: Rob Long, Executive Director, Uplifting Athletes

May 23, 2019

The Basics
Name: Rob Long

Title: Executive director

Organization: Uplifting Athletes

Social Media Links:

Headquarters: Philadelphia

How did you become involved in rare disease: I was diagnosed with brain cancer in December 2010. My teammates on the Syracuse University football team started the Uplifting Athletes chapter at the university in my honor. I became fully involved in supporting and helping the rare disease community.

Previous career: Student

Education: B.S. from Whitman School of Management at Syracuse University and an M.S. from the Newhouse School of Communications at Syracuse University

The Organization
Organization’s mission:  Our mission is to inspire the rare disease community with hope through the power of sport.

Organization’s strategy: Our strategy is to leverage the platform that athletics has in this country and around the world to bring awareness, support, and funds to the rare disease community.

Funding strategy: We have two main areas of revenue. We have grassroots fundraising through our chapters and corporate sponsorship for our programs.

What’s changing at your organization in the next year: We are undergoing a lot of growth. We’re hoping to add staff for the first time in a few years and continue to execute on our strategic plan. We are also working to grow our audience in college football and in the rare disease community.

Management Style
Management philosophy: My management philosophy comes down to three words: plan, purpose, and execution. We want to make sure that we have a plan and a purpose for everything that we do and a way for successfully executing that. I think it’s one of the things for us that’s been a big shift to where we are now. We want to be able to move forward in a manner that will allow us to be successful.

Guiding principles for running an effective organization: Clear direction and accountability are essential. It’s pretty much answering the question, “Is what we are doing in the best interests of the rare disease community and at the same time allowing us, Uplifting Athletes, to carry out our mission for years to come?”

Best way to keep your organization relevant: The best way to stay relevant is to continue to network and grow in college football and within the rare disease community. We haven’t even come close to reaching a saturation point in either one of those areas. As we continue to grow and build a network in both of those, we’ll stay relevant.

Why people like working with you: We have the unique ability to bring sports, which is something that’s mainstream, and connect to the cause of the rare disease community. Sports has the resources of awareness and money that the rare disease community is desperately in need of.

Mentor: There are a lot of people who have helped me tremendously along the way. One of the people that we work with here is John Trzeciak, who is a volunteer. John has been a mentor from a business standpoint and 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 organizations.

On the Job
What inspires you: The people we work with and the people we are able to have an impact on. Also, for me personally, what my family has been through and the struggle that we’ve had with cancers and rare diseases. I want to share that story to help make a positive impact out of something that’s been really quite tough.

What makes you hopeful: Getting to meet the next generation of rare disease researchers and young investigators. The passion and intelligence that they have and that they bring every day.

Best organization decision: About six months after I started here, we hired Brett Brackett as director of sports impact. Brett played football at Penn State. He also ran the Uplifting Athletes chapter with at Penn State and played five years in the NFL. When he retired, we convinced him to join our team and he’s been just an incredible piece of what we do and has allowed us to get to where we are.

Hardest lesson learned: There’s a long way to go in the rare disease space and we’re not going to be able to fix it all ourselves in a short period of time. It’s going to take collaboration and it’s going to be a long haul to get to a point where we are satisfied.

Toughest organization decision: 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 organization 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 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 and a really tough decision. 

Biggest missed opportunity: Not having the resources or funding to hire certain people at certain times.

Like best about the job: I absolutely love what I do.

Like least about the job:  The fact that you constantly come across great people who have been dealt really crappy hands.

Pet peeve: Not always having money or resources to execute exactly what we would want as an organization

First choice for a new career: I’d love to get to play in the NFL.

Personal Taste
Most influential book: The Body Keeps the Score: Brain, Mind, and Body in the Healing of Trauma by Bessel van der Kolk. It’s about post-traumatic stress disorder and it is something that I recently had been diagnosed with and had been dealing with for the last eight years. It really helped me understand what I was feeling, especially working in this line of work where what my trauma is something that I had to face on a daily basis when I talked about my story and my diagnosis. It helped me with an understanding of what I was going through and how to manage it so I could continue to do what I love.

Favorite movie: Good Will Hunting

Favorite music: I love all music. I don’t have a specific genre. I listened to Waterfalls by TLC 10 times today.

Favorite food: Eggs over easy with toast and bacon

Guilty pleasure: Sour gummy worms

Favorite way to spend free time: Doing anything with my future wife. I’m getting married May 25.

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