(WWJ) — Friday is Rare Disease Day, an internationally observed day to raise awareness of rare diseases and the people who live with them.
The Detroit Lions, Tigers and other local organizations are helping spread the word about BPAN, an ultra-rare neurodegenerative disease that affects less than 1,000 children worldwide.
You may see the #DontForgetMorgan circulating this week on social media. That's the name of a group started by Kelly Kozole, a senior VP of Business Development with the Lions, whose 10-year-old daughter Morgan was diagnosed with BPAN in 2019.
Don't Forget Morgan was started to help find a cure for the disease that will "eventually take her sweet life away too early."
"Upon hearing the diagnosis of BPAN for Morgan in 2019, Kelly formed a plan on how to raise awareness and funding for BPAN," Kozole's bio says on the organization's website.
There is a new gene therapy project, which could be a cure for BPAN, according to Don't Forget Morgan, but it will take a lot of money to move the research forward.
Kozole told WWJ Newsradio 950's she's grateful for the support from the Lions and others in the fight to find a cure for BPAN.
"The Detroit Lions posted on all of our social media this week and then very fortunate that some big names — Eminem, Kid Rock, Bob Seger, Barry Sanders, Calvin Johnson — it's very great to work in an organization that supports Morgan and our rare disease effort to beat BPAN," Kozole said.
Officially known as Beta-propeller protein-associated neurodegeneration, BPAN is "a genetic disorder that damages the nervous system and is a progressive disease, which means that that kids will eventually lose all the skills they've worked so hard to gain," according to the Don't Forget Morgan website.
More information on the disease can be found at dontforgetmorgan.org or at beatbpan.org.
