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Rare Disease Day 2021: Social Media

Social media for Don’t Forget Morgan was posted by several organizations and NFL players to help bring awareness to BPAN.

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ESPN - Michael Rothstein

'This is why I'm here': A Detroit Lions VP tries to save her daughter from rare disease.

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Sports teams, players and celebrities take to social media to help find a cure for BPAN

Social media for Don’t Forget Morgan was posted by several celebrities and NFL teams to help bring awareness to BPAN. Don’t Forget Morgan content was posted to over 81 million followers over the weekend of Rare Disease day.

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UNIVERSITY OF MICHIGAN:

MICHIGAN MEDICINE

Morgan Kozole was born on January 12, 2015. She was completely healthy and, as she grew, seemed to be hitting developmental milestones. There were some delays, but doctors were not overly concerned. However, Morgan’s parents could not shake the feeling that something was wrong, and at 18 months Morgan was not walking or talking and seemed to have fallen behind.

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In Detroit Lions front office, Kelly Kozole tackles critical issues beyond just football

The Detroit Lions coaching staff has its hands full this offseason after a disappointing 2019. Inside Ford Field's executive office, Kelly Kozole, senior vice president of business development, is tackling a different set of issues.

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Michigan parents create foundation to raise BPAN awareness after daughter's diagnosis

Detroit Lions SVP of Business Development Kelly Kozole joins us in studio with her family to tell us more about BPAN, a rare disease that her 5-year-old daughter has.

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How you can help people battling BPAN & Pitt Hopkins Syndrome

Detroit Lions Senior Vice President of Business Development Kelly Kozole, along with her husband Kevin and daughter Morgan stopped by Broadcsat House to talk about Morgan's battle with BPAN.

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Kelly Kozole talks with WWJ Newsradio 950

Kelly Kozole talks joins WWJ Newradio 950 to drive awareness around BPAN before National Rare Disease Day on February 29th, 2020.

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Kelly Kozole talks with Alisa Zee - Part 1

Kelly Kozole talks with Alisa Zee to drive awareness around BPAN before National Rare Disease Day on February 29th, 2020.

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Kelly Kozole talks with Alisa Zee - Part 2

Kelly Kozole talks with Alisa Zee to drive awareness around BPAN before National Rare Disease Day on February 29th, 2020.

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Kelly Kozole talks with Paul W. Smith on News/Talk 760 WJR

Kelly Kozole talks joins the Paul W. Smith show to drive awareness around BPAN before National Rare Disease Day on February 29th, 2020.

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Don't Forget Morgan: Local Family Determined To Cure Rare Brain Disease With Only 500 Known Cases

When it happened to them, new parents Kelly and Kevin Kozole started an endless round of doctor visits, diagnoses that were actually misdiagnoses, tests upon test to figure out why baby Morgan wasn't talking or walking.

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Royal Oak Today: Couple fights for cure to save young daughter

Thoughts of their 5-year-old daughter suffering from an early, painful death pushed Kelly and Kevin Kozole to start a nonprofit organization called Don't Forget Morgan, which raises awareness and money for research on BPAN.

The Don't Forget Me Foundation is a nonprofit, tax-exempt charitable organization under Section 501(c)(3) of the Internal Revenue Code. Donations are tax-deductible as allowed by law (Tax ID 84-3358278).

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