Fundraisers so far this year bring in $12,400

April 2021

- By Cynthia Craig


Levi Gartman, 8, who has PKAN and his sister Lilah,
of South Windsor, Connecticut, wear red
for PKAN fundraiser.


Organizers of the fundraiser
prepare signs to hang up
around the school.

Former classmates of eight-year-old Levi Gartman of South Windsor, Connecticut, held a fundraiser in his honor and raised $900 for PKAN research.

Levi was diagnosed with PKAN in late 2018, and the daughter of his special education teacher, who adores Levi and wanted to do something meaningful for him, came up with the fundraiser idea. Levi’s dad, Jeff, who calls his son “the happiest little guy,” said that was one of the sweetest things he had heard in a while.

For the fundraiser, students at Philip R. Smith Elementary School, including Levi’s sister, Lilah, asked everyone to wear red and bring a dollar to school in tribute to Levi. The donations poured in, one dollar at a time.

Meanwhile, our faithful Facebook birthday fundraising volunteers have been busy since January, raising over $6,500 to support our organization. Our hat is off to Diane Anlauf, Daniele Bianchi, Simone Bianco, Jennifer Bolkin Greene, Monika Burzy, Xochitl Galvan Wilson, Luna Ionita, Amber Jones, Dawnie Kennedy, Alison Lea, Connie Mignon Meschbat-Velez, Patricia Ripp, Timmy Smith, Darian Stray, Malgorzata Wista, Gloria Woolard Basista and Andrea Zulawski.


Bhavin Mehta has PKAN
and was spotted in Mumbai, India.


Lily Smith has PLAN
and was spotted in Fresno, California.

Finally for Rare Disease Day, Feb. 28, our families displayed their unique stripes to have some fun and support our organization. Because the zebra is the symbol for rare disorders, we posted ‘rare zebra sightings’ on our Facebook page. Over 30 NBIA families submitted photos of their rare, loved ones throughout February. In all, they raised $5,000 and celebrated their uniqueness. As Dr. Seuss says, “Today you are You, that is truer than true. There is no one alive who is Youer than You.”

If you are interested in organizing a fundraiser to benefit the NBIA Disorders Association, we are here to help support your efforts. You can find our toolkit online at https://www.nbiadisorders.org/images/FundraisingToolkit.pdf or contact Development Committee Chair Amber Denton at amber12783@yahoo.com for advice and support.