- By Cynthia Craig

Despite the ongoing pandemic, family and friends found a variety of ways to honor individuals living with NBIA and support the work being done by the NBIA Disorders Association. Between May and June, they raised $9,315 for NBIA research and family support.

Paula Dauguet, daughter of Patricio and Norma Dauguet of San Jose, California, has been collecting and cashing in recycling then donating the proceeds to our organization for over 10 years. The family adds money from savings to round up the amount. A $200 donation in July brought the family’s overall giving to nearly $3,800 — all in honor of friends Brent Bonfiglio of Fremont, California, and his family. Brent has PKAN and his parents, Gaetano and Veronica, are integral members of our NBIA community.

Olivia Lewis and Madison GreeneAs soon as Olivia Lewis of Chatsworth, California, received her bat mitzvah date, her first thought for a mitzvah project was to raise money for BPAN research, the rare disorder her friend Madison Greene has. Madison is the daughter of Brian and Jennifer Greene, of Porter Ranch, California, and is “an incredible kid,” Olivia says. She wants to see progress made in curing this rare disease during Maddie’s lifetime and has raised $2,610 and counting toward that goal.

Levi Gartman and his teacherEli Terry Elementary School in South Windsor, Connecticut, chose to honor Levi Gartman with donations to PKAN research in May and brought in $1,485. Levi is the son of Jeff Gartman & Danielle Nitopi and has PKAN but doesn’t let that define him. For the fundraiser, he picked the song of the day, helped with the morning announcements and did the joke of the day using a communication switch, all the while wearing his favorite color, red. Students cheered when Levi passed them in the hall.

Eli Terry Elementary School in South Windsor, Connecticut, chose to honor Levi Gartman with donations to PKAN research in May and brought in $1,485. Levi is the son of Jeff Gartman & Danielle Nitopi and has PKAN but doesn’t let that define him. For the fundraiser, he picked the song of the day, helped with the morning announcements and did the joke of the day using a communication switch, all the while wearing his favorite color, red. Students cheered when Levi passed them in the hall.

Angels Around UsPhyllis Ose of Brooklyn Center, Minnesota, is donating proceeds from her book, Angels Around Us by Miss Noone, in memory of her grandson, Jared Ose. Jared had PLAN and died in 2017 at the age of 15. So far. Ose’s book, available on Amazon at Angels Around Us: Nonne, Miss: 9781645591979: Amazon.com: Books has brought in $344 for PLAN research.

Rare Adventures Coloring BookAnother book project benefits BPAN research and is the brainchild of John Anastasiadis of Andover, Maine, the father of Kyriaky, who is 9 and has BPAN. Anastasiadis, who got great feedback after drawing a birthday card of the Hulk in leg braces for a boy with cerebral palsy, created a superhero coloring book featuring characters representing the NBIA community. The Rare Adventures Coloring Book seeks to embody some of the dreams of those with NBIA, help families heal through a little art therapy and celebrate those who are working to bring hope to us all,” Anastasiadis says. The coloring book is available at https://rare-adventures.square.site/ and has raised $1,666 to date for BPAN research.

Rare Adventures Coloring BookIn addition to these gifts, Facebook birthday fundraisers brought in $3,010 for NBIA family support. Big thanks to Karen Cudahy, Tracy Dean, Samantha Denison, Sarah Doerr, Matt Dyer, Rachael Garnett, Leslie Jamail, Astrid Koudal Maul, Kinga Kuti, Ashley Miller, Michelle Lynn Roland, Desirie Rogers, Merima Sahiti-McClain, Judy Pike Smith and Michelle Warden.In addition to these gifts, Facebook birthday fundraisers brought in $3,010 for NBIA family support. Big thanks to Karen Cudahy, Tracy Dean, Samantha Denison, Sarah Doerr, Matt Dyer, Rachael Garnett, Leslie Jamail, Astrid Koudal Maul, Kinga Kuti, Ashley Miller, Michelle Lynn Roland, Desirie Rogers, Merima Sahiti-McClain, Judy Pike Smith and Michelle Warden.

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 adenton@NBIAdisorders.org for advice and support.