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How you can help people battling BPAN & Pitt Hopkins Syndrome

February 29 declared National Rare Disease Day
Posted at 9:34 AM, Feb 29, 2020
and last updated 2020-02-29 16:54:41-05

SOUTHFIELD, MICH (WXYZ) — February 29 is National Rare Disease Day.

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.

BPAN (Beta Propeller Protein Associated Neurodegeneration) is an extremely rare, neurodegenerative disease most commonly found in females with less than 500 diagnoses in the world and only four in Michigan. The progressive disease impacts motor skills and speech during early development, then gradual loss of function leading to dementia and dystonia later in life.

In recognition of Rare Disease Day (February 29), you can donate to research for BPAN through website www.dontforgetmorgan.org and continue the discussion around the topic using #RareDiseaseDay.
In addition, the Detroit Lions will be sharing information about the disease and how you can get involved on all social/digital platforms, as well as other high-profile artists, athletes and influencers who are passionate about increasing BPAN awareness.

Saturday, February 29 has also been declared as Rare Disease Day 2020 in the City of Warren, Rare Diseases include Pitt Hopkins Syndrome. Pitt Hopkins Syndrome is just 1 of nearly 7,000 diseases and conditions that are considered rare. Nearly 1 in 10 Americans have a rare disease or condition. Isabella Turkiela, a 7 year-old Warren resident has Pitt Hopkins Syndrome. Warren City Hall will be illuminated in blue, green and pink from dusk Saturday, Feb. 29, 2020 until dawn on Sunday, March 1, 2020.

In addition, to help spread awareness further as well as raise money for Pitt Hopkins Syndrome at NO EXTRA cost to the consumer, the Pitt Hopkins Research Foundation is set up with Kroger Community Rewards in the state of Michigan. If people choose Pitt Hopkins Research Foundation when setting up their Community Rewards on their Kroger Rewards Card, Kroger will donate a percentage of their purchases at no extra cost to them. This is a great option for people that want to help, but may not have extra money to donate directly.

Also, for those that shop Amazon, the Pitt Hopkins Research Foundation is set up as a choice if they use smile.amazon.com.