Facebook fundraisers raise over $5,000 this summer
October 2020
By Cynthia Craig
NBIA families and friends around the country marked birthdays and other milestones on Facebook by raising $5,485 in donations from June to September 2020.
In all, 154 donors contributed online. Normally, our organization sees many in-person fundraisers in the summer, but that hasn’t been possible this year because of the pandemic.
Among those holding Facebook fundraisers were Michelle Ann Arcari, CJ Bailey, Donald Britton, Aide Evangelista, Vicki Gay Hill, Lizzie Jane, Sabrina Kennedy-Andy, Astrid Koudal Maul, Becca Pasiowitz, Caressa Perez, Linda Rohm Danjore, Michelle Lynn Roland, Jodi Schneider, Tysen Scott, Kenneth Shareef, Keith Stover, Sherri Titus, Jessica Townsend, Bobby Vale and Ann Walsh.
Mike Cohn coordinated a Facebook stream fundraiser by Hazardous530 Brandon Hampson and his daughter Little Hazardous for 12 hours of family friendly trucking and farming simulators at www.facebook.com/HaZaRdOuS530. Thank you to all for such a fun time that raised $280 for our organization. We look forward to partnering up with you again in the future.
Hazardous530 Brandon Hampson and his daughter Little Hazardous held a fundraiser for 12 hours of family friendly trucking and farming simulators that raised $280 for our organization.
We are grateful to all of our supporters for their continued support.
If you are interested in organizing a fundraiser this fall 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 our Development Committee Chair Amber Denton at amber12783@yahoo.com for advice and support.
Fundraisers since November bring in more than $44,000
June 2020
By Cynthia Craig
The pandemic presents a challenging time for nonprofit fundraising, with fun runs, golf tournaments and other popular events gone. But NBIA families and friends have embraced the challenge, with many supporting us in a variety of ways.
The efforts of our families since November 2019 — before and after social distancing and lockdowns took effect — have raised $44,885 for the NBIA Disorders Association. Here’s a closer look at how they did it:
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Annual Fundraiser at Studio Dhoom in Ashburn, Virginia, benefits NBIA Disorders Association. |
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Goyal family from Ashburn, Virginia holds bingo fundraiser with family and friends. |
The family of Sahil Goyal who live in Ashburn, Virginia has been fundraising for NBIA Disorders Association since 2011. Sahil, who is 15 and has PKAN, dedicates his birthday gifts every year to the NBIA Disorders Association.
Sahil’s younger brother, Devaj, is also active in fundraising, along with their parents, Devki Gupta and Jyoti Goyal. Devaj belongs to a Bollywood dance troupe at Studio Dhoom in Ashburn, Virginia. Owners Aanal and Vaishal Sheth have dedicated the proceeds from their annual fundraiser in November to our organization for the last two years. This year’s total was $2,600.
Before the United States shut down in March, the family also held a bingo fundraiser in a local restaurant, Delhi 6 Indian Cuisine. The restaurant provided space and snacks, and along with support from the local community, the event netted over $1,300. Clearly, Sahil and his family have a faithful and generous following.
Will and Jessica Hindes of Water Valley, Alberta, Canada, joined our NBIA family in May 2018, after daughter Kaydence’s BPAN diagnosis. They soon became energetic fundraisers, along with their two other children, Isabella and Hudson. So far, an online fundraiser Jessica started in January has raised $648 for BPAN research.
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James Wight of Houston, Texas, with his daughter Evalyn at the Fidelity Investments Woodlands Marathon. The family raised $6,185 with the help of family and friends. |
James and Carolyn Wight of Houston were two of the 3,956 participants in this year’s Fidelity Investments Woodlands Marathon earlier this year on behalf of their daughter, Evalyn, who has BPAN. They are also parents of Stephen, JT and Levi. The marathon is a major qualifier for other races such as the Boston Marathon. With help from friends and family, the Wight’s raised $6,185 for the NBIA Disorders Association and BPAN research. That includes a $500 prize for placing sixth in the fundraising challenge! We are inspired by the family’s efforts and by Evalyn, whom her father describes as “the happiest person in the world.”
Held five days after Thanksgiving, #GivingTuesday, is devoted to encouraging charitable donations. Our families helped by bringing in gifts totaling $5,502. Most notable was the Facebook campaign in memory of Richard and Sandy Leap’s beloved daughter, Brittany. Other gifts came from campaigns by Lidiya Bezuglova, Dianne Carroll Bertrand, Cyndi Craig, Kathleen Chambers, Gina Engblom, Jennifer Bolkin Greene, Ma LaMonaca, Cado Orzechowski, Amanda Ray and Kerri Walsh.
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Amber Denton with her daughter Sydney of Houston, Texas, show off the zebra t-shirt Amber created especially for the NBIA community to raise funds for our organization. |
Our families also supported Rare Disease Day, held annually since 2008 on the last day of February, to raise awareness about rare disorders. The zebra is the official symbol of rare diseases, and in that spirit, board member and Development Committee Chair Amber Denton designed a shirt unique to our NBIA community—a zebra with each disorder imprinted into the stripes. The shirts, including T-shirts, hooded sweatshirts and three-quarter length sleeve baseball tees, were a huge hit! More than 282 were sold, raising over $3,500. The campaign is still running with new summer looks available at https://www.bonfire.com/nbia-rare-disease-day-zebra-shirt/.
Separately, our Rare Disease Day Facebook fundraiser, along with campaigns by Katie Kadamus, Tiffany Smith and Christine Tefft, raised $7,850. Also in celebration of the day, board member and Social Media Director Erin Davis, sent out a plea for stories from our NBIA families about their struggles with this rare disease, to be spotlighted on our Facebook page. Moving stories were received from more than two dozen families. If you haven’t yet read these inspiring stories you can find them at Rare Disease Day 2020 Family Stories.
NBIA families and friends around the country continued raising funds via Facebook to mark birthdays and other occasions. From November to May 2020, we received more than 250 gifts totaling $7,100. These fundraisers were held by many supporters, including, Sarah Doerr, Katie Kadamus, Beverly Putt, Amanda Ray, Christine Tefft, Karen Cudahy, Alessandro Dragotta, Kate Hale Anderson, Retta Hughes Howard, Cori Jones, JD Jordan, Connie Mignon Meschkat-Velez, Terilynn Louise Meschkat Townsend, Kim Murray Mitchell, Sarah Mizell McGarvey, Wanda Pimentel, Tim Syres, Sky Valentine Bryant and Sherry Wheeler Vance.
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During the COVID-19 pandemic, many nonprofits, including ours, are struggling as they grapple with big downturns in donations. In response, May 5 was designated as an additional giving day in the United States called #GivingTuesdayNow The support of the NBIA community is heart-warming and more essential than ever.
Meg Talley Dyer shared her fears about the pandemic and helped our organization launch a campaign with a goal of $10,000 by the end of May. Meg is a longtime advocate, past board chair and current board member. She and her husband, Matt, are the parents of daughter Dylan, who has BPAN. We exceeded our goal by raising $10,200!
If you are interested in organizing a fundraiser to benefit NBIA Disorders Association, we want to support your efforts. We have a toolkit at https://www.nbiadisorders.org/images/FundraisingToolkit.pdf. Our Development Committee members, who have successfully raised money for NBIA Disorders Association, are also willing to assist you. Committee Chair Amber Denton can be reached at amber12783@yahoo.com for advice and support.
This is Lia, our happy, friendly little girl. Although you can’t tell from her picture, she was diagnosed in January 2017 with an ultra-rare neurodegenerative disease called BPAN (Beta-Propeller Protein Associated Neurodegeneration). Our world was turned upside down the day we got this devastating diagnosis. It’s been four years, and we have adapted to our new normal. We live a very happy life, despite the challenges and uncertain future we face with Lia’s disorder.
