“A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.”

—Christopher Reeve

This powerful quote appeared on the screen during the NF Network's "Meet the Docs" Lunch and Learn event in Marietta, Georgia, on September 6 as Hilary Jordan inspired the NF community by sharing her personal journey about her hero, her brother Sean. Below is a copy of her heartfelt speech. You can read more about the event HERE.

Hilary's Speech:

I am proud to stand before you today as an ambassador for the NF Network and to support this journey of hope with all of you. The NF community holds a very special place in my heart — not just professionally, but personally.

My connection to NF began in support of my brother, Sean, who was diagnosed with Neurofibromatosis at a young age. At the time of his diagnosis in the early 70’s very little was known about the disease and very little support was available to families. 

My brother was a strong advocate for NF and spent many years participating in clinical trials, educating others and speaking openly about how NF had impacted his life. Over the years, Sean endured countless challenges — surgeries, hospital visits, and various hurdles that come with NF. But through it all, he never let the disease define him. He chose to live a life grounded in laughter, love, gratitude, and purpose.

In 2005, Sean took part in an NF clinical trial at the NIH. Our family made multiple trips to Maryland as the team at NIH worked closely with him to learn more about NF. Sean was incredibly proud to be part of this research. He felt honored knowing that his participation could help others with his disease in the future. It was during this time that we discovered his case was especially unique — Sean had both NF1 and NF2.

True to who he was, Sean received this news with the same strength, humor, and optimism that he brought to every part of his life. He wore his NF like a badge — not of burden, but of courage and resilience.

My brother’s light continues to shine through the lives he touched and the legacy he left behind. In honor of my hero, I share this light with all of you — as we stand together, tall and united, in the fight against NF. 

 

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