• March Newsletter 2025
  • Family Conference 2023
  • 9th Symposium 1
  • First Legacy Guardian Peggy Davis


OUR MISSION

In our drive to find a cure for Neurodegeneration with Brain Iron Accumulation (NBIA),
we provide support to families, educate the public and accelerate research with collaborators from around the world.


 

News

NBIAcure prepares to submit for FDA
approval of CoA-Z compound

 

Educational Resources

​Posters, flyers and
other educational handouts

 

SCHOGER 

Uncles John and Matt Schoger of Worthington, Ohio,
with their niece Alyssa Miles of North Canton, Ohio,
who has BPAN.

Our supporters found inspiration in nature, tradition and online when raising $3,555 to support the NBIA Disorders Association in October and November.

John and Matt Schoger of Worthington, Ohio, spent five days hiking 57 miles of the Appalachian Trail in honor of their niece, Alyssa, of North Canton, Ohio, despite the threat of bad weather from Hurricane Delta. The Schogers’ trek raised $1,872 for BPAN research in October. They describe their niece as a “bright light of love and laughter to family and friends.”

Honoring a tradition that began more than a decade ago, the Bethel University Physician Assistant Program held its eleventh annual 5K walk/run to “Scare Away NBIA” Oct. 24 at Henry County High School in Paris, Tennessee. Runners and walkers, in person and virtual, donned costumes for the event, which raised $985. The tradition began in honor of the program’s then-director, whose son was diagnosed with NBIA. Cole Tanner of Germantown, Tennessee, and his family remain the inspiration for this yearly tradition. We are grateful the Class of 2022 is keeping the tradition alive.

Bethel College Fundraiser 

Participants in the “Scare Away NBIA” fundraiser on October 24 in Paris, Tennessee. This was the eleventh annual Bethel University Physician Assistant Program fundraiser for NBIA Disorders Association.

In addition to those events, we received $698 from Facebook fall birthday fundraisers held by Elijah McBurney, Ralph Otte, Wanda Pimentel, Anna Rakaric, Patricia Trevino and Teasha Tyler.

We are grateful to all of our supporters and could not do our work without them.

If you are interested in organizing a fundraiser to benefit 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.

 

 

This holiday season, our Development Committee launched the NBIA Disorders Association’s first-ever Holiday Gift Boutique. The site took off immediately, with proceeds from sales bringing in $3,500 so far.

The boutique featured a variety of decorative, wearable and edible goodies and will remain open through the end of the year for Bonfire Apparel sales only. Go to https://www.bonfire.com/store/nbia-disorders-holiday to find one-of-a- kind shirts in 12 different designs, including ones that say “Limited Edition” and “Ultra Rare Kind of Love.”

For four weeks, the boutique also sold chocolates from See’s Candies and fragrant wreaths from Three Rivers Farms. Unique NBIA-themed ornaments in the shape of a reindeer, star and a snowflake from the Baum Design Shop also were featured. Through generous donations, we are also able to send our beloved U.S. Angel families a sponsored NBIA Angel ornament.

variety in boutique

Our most popular item was our hand-poured NBIA candle from Phil’s Candle Shop and Aroma 4480 which featured scents like Marshmallow Fireside and Christmas Hearth.

Visitors to our Holiday Gift Boutique also had the opportunity to become a Partner in Hope in honor of an NBIA family or the individual with NBIA. This initiative has brought in 25 new monthly donors so far – and there is still time to participate for a holiday gift that lasts all year.

Big thanks to our Development Committee, including Chair Amber Denton of Houston, Jenny Wildvank of Huntington Beach, California, Kathleen Ayers of Georgetown, Texas, Jennifer Sanchez of Spring, Texas, and Kallan Ritzman of Oakland, California, for their creative ideas and hard work.

Participating Vendors in our Holiday Boutique

Baum DesignsBonfireSees

 

AromaThree RiversPhils

 

 

 

 

Donors who are 70 ½ can save on taxes while supporting their favorite charity

Are you 70 ½+ years old with a traditional IRA? If so, you likely know you are required to take an annual IRA distribution, typically taxed as income.

You may not know that you can donate up to $100,000 directly from your account to a qualified charity like ours without having to pay income taxes on the money. This is called the IRA charitable rollover or qualified charitable distribution (OCD).

You can donate all or part of your required minimum distribution tax-free each calendar year even if you don’t itemize your deductions. To learn how, contact your IRA custodian or talk it over with a tax professional.

Notice: This information is not intended as legal or tax advice. For such advice, please consult an attorney or tax advisor.

 

Donations up to $300 may qualify for tax benefit

Under this year’s pandemic relief program, taxpayers can deduct up to $300 for qualified charitable donations.

The CARES Act included the provision to encourage charitable giving for all taxpayers taking the standard deduction on their 2020 tax filing. Since most people no longer itemize their deductions with the new tax laws created in 2017, this is a benefit that hasn’t been available for the past few years.

Because the deduction is taken “above the line,” it reduces by up to $300 your adjusted gross income – an important number because it determines your eligibility for tax credits and other deductions.

To qualify, the donation must be made by cash, check or credit card to a qualified 501 (c) (3) nonprofit by December 31.

 

 

- By Jennifer Wildvank

Giving Tuesday 2020Our Giving Tuesday “Smile Wider, Laugh Longer” campaign was a big success, reaching our $35,000 goal on Dec. 11. It is continuing to raise money through the end of December, so it’s not too late to join in.

Giving Tuesday, always held the first Tuesday after Thanksgiving, is an annual event in which nonprofits appeal for support. Donors to the NBIA Disorders Association’s campaign gave on various online platforms, including Facebook, Instagram, PayPal and our peer-to-peer fundraising page. Others mailed checks.

We offered contributors a chance to double their impact by providing a matching gift from the Bonfiglio family in Oakland, California, Christina Brant of Waukesha, Wisconsin, and several donors who wished to be anonymous. Every gift was matched dollar for dollar up to $8,000.

The campaign celebrated the smiles and laughter of NBIA loved ones and provided positive images for families and donors to rally around. As social media director coordinating this campaign, I asked NBIA families to submit videos and photos of their loved ones to create a video highlighting the brightness and joy our NBIA folks bring us. The video received over 20,000 views within two days of posting. Check it out:

#SWLL2020 VIDEO


Initially, we set a goal of $20,000, but we surpassed that on Giving Tuesday and set a loftier goal of $35,000 to reach by the end of this year.

We have so many people to thank for this successful campaign. Multiple families created their own Giving Tuesday Facebook fundraisers, with most sharing our video and asking their friends and families to donate. Thank you to: Terilyn Townsend, Cado Orzechowski, Meg Talley Dyer and Matt Dyer, Kathleen Ayers, Gail West, Kathleen Chambers, Kerri Walsh, Susie Fields Zimmer, Veronica Bonfiglio, Jennifer Bolkin Greene
and Kim Murray Mitchell.

And to all those who shared information about the fundraiser and helped us to raise donations and awareness, thank you as well!

THANK YOU VIDEO


Eight Instagram influencers with large followings also promoted the campaign and included a donation button on their stories. I demonstrated for our NBIA families how this new button could be used on Instagram and how the exclusive “donated” sticker could be earned so that they could also use and promote it. This generated donations of over $1,600 on Instagram in just two days.

Besides being grateful to our donors, sharers and promoters, we thank all the families who heard our call and sent us beautiful photos and videos of their NBIA loved ones. Their precious smiles and laughs are the reason this campaign was such a success.

 

 

Partners

nbia alliance logo1NBIA Cure logoRare Disease Day PartnerTIRCON

Genetic Alliance logoNORDEURORDISGlobal Genes


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