Executive Director Rob Long chosen by NORD as 2021 Rare Impact Award honoree

Uplifting Athletes Executive Director Rob Long has been chosen as a 2021 Rare Impact Award honoree by the National Organization for Rare Disorders (NORD).

The Rare Impact Awards celebrate the individuals, groups and companies making extraordinary strides on behalf of the millions of Americans impacted by rare disease.

“Despite the pandemic and the challenges we have faced, there are still heroes to be found among us from whom we can draw inspiration and motivation to keep moving forward,” said NORD President and CEO Peter L. Saltonstall. “At NORD, we are proud to honor these people, groups and companies for their achievements. We’re humbled to work alongside them and appreciative of their tenacity and commitment to a brighter future for our community.”

Rob and the rest of the 2021 honorees will be celebrated on June 28 during a live streaming event that starts at 7:00 p.m. EST.

Rob is a rare disease patient who had his life turned upside down more than a decade ago when he was diagnosed with a rare and aggressive form of brain cancer called anaplastic astrocytoma. His prognosis at the time was less than encouraging, and his surgery, recovery and treatment took 16 months. An All-American punter at Syracuse, Rob was on a path to the NFL when he was diagnosed and lost out on that opportunity.

After joining Uplifting Athletes in 2016, Rob took over as the second Executive Director in the organization’s history late in 2018. In his more than two years as the Executive Director, Rob has advanced the impact Uplifting Athletes has on the Rare Disease Community significantly on two fronts. 

First, as a patient, he has the perspective that allows the organization to actively use their resources to engage with patients, families and caregivers on a deeper level to inspire them with hope.

Secondly, he has been largely responsible for expanding Uplifting Athletes’ commitment to funding research through the Young Investigator Draft. When Rob took over as Executive Director, the Young Investigator Draft was just getting started. Because of Rob’s unique and personal experience as a patient himself, he has charted a new and innovative way to support rare disease research.

Under Rob’s guidance, Uplifting Athletes has provided more than $300,000 in funding to 18 different rare disease researchers through its first three Young Investigator Drafts. From year No. 1 to year No. 2 the amount of each individual grant doubled, and in 2021 the organization committed to expand the number of grants it provides and established the Underrepresented Researchers in Medicine initiative to ensure underrepresented minority researchers are funded and celebrated through the Young Investigator Draft.

The Rare Impact Awards program is part of the Living Rare, Living Stronger NORD Patient and Family Forum, an annual conference that brings patients and families, advocates, health care professionals and other supporters together for learning, sharing and connecting.

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