Fundraise

Community-based fundraisers are an incredible way to support ASXL research. You can host a fundraiser anytime using the built-in tools on Facebook or Instagram, or get in touch with us to help you set up your own custom fundraising page. The sky is the limit with creative opportunities to raise funds with your community – and we’re here to help!

Host your own fundraiser online or in person

If you have a fundraising idea for an Awareness Day, GivingTuesday, or any occasion, we’re here to help you put your idea into action! We can help support you with planning, promotional materials, and the technology to collect donations.

How we can help

Building a custom fundraising page for your event, including your family’s story and pictures
Sending ARRE Foundation materials for your event, including brochures, banners, and giveaway items like pens and keychains
Advising on event design, including setting an appropriate fundraising goal, developing an event timeline, how to ensure your event is a success
Support with event communication and outreach, including designing custom graphics, writing a press release to reach local media, and developing a plan to solicit local businesses for sponsorship (if you want!)

Host a Facebook or Instagram fundraiser

You can start your own fundraiser for any occasion anytime on Facebook or Instagram in just a few clicks. If you have a Canva account, you can create your own ARRE Foundation-branded cover image for your Facebook fundraiser using the template below.

Facebook: Launch your campaign page

Instagram: Create and add a fundraiser a new post (under “More options”) or story (add the Donation sticker)

Host an Awareness Day fundraiser

Awareness Days make great fundraising occasions! Each ASXL-related disorder has its own awareness day:

Bohring-Opitz Syndrome Awareness Day (ASXL1) – April 6
Shashi-Pena Syndrome Awareness Day (ASXL2) – October 6
Bainbridge-Ropers Syndrome Awareness Day (ASXL3) – February 5

There’s also Rare Disease Day, which is the last day of February. We have lots of resources for your fundraising campaign in the ASXL Resource Library, including sharable graphics, facts and stats, videos, and more.

Host a GivingTuesday fundraiser

GivingTuesday is the international day of giving held the Tuesday after U.S. Thanksgiving. It is the ASXL community’s biggest fundraising occasion each year. Since 2021, ASXL families have raised over $72,000 to support ASXL research and education through online fundraisers on GivingTuesday. We provide a day-by-day playbook for your campaign and support you with personalized graphics and resources.

Past fundraising events hosted by ASXL families

Winter Ball

ARRE Foundation founder Laura Badmaev annually plans the Winter Ball fundraiser in southern Maine. Laura’s son Alex has Bohring-Opitz Syndrome. This fun family event, which includes lots of costumes, crafts, a snack bar, and small silent auction, is hosted in partnership with a church with support from local businesses as sponsors. Attendees pay a small registration fee to attend the fundraising event.

CrossFit workout fundraiser

The CrossFit community in St. Cloud, Minnesota rallied together for a Saturday morning workout at HybridX Fitness in honor of Amelia Walsh and her parents Bob and Sam. Amelia has Bainbridge-Ropers Syndrome. Their creative workout included Alternating dumbbell snatches, Ring pushups, Rows, and Elbow-to-knee sits ups and carrying sandbags equivalent to Amelia’s weight. Participants made a suggested donation to the ARRE Foundation as the “fee” to take the class.

Drive thru lemonade and hot chocolate stand

Friends and neighbors of Adair Adams, daughter of ARRE Foundation Board member Lauren Adams, planned an after-school drive thru lemonade and hot cocoa stand in honor of “Rare Adair” and Bainbridge-Ropers Syndrome Awareness Day in Birmingham, Alabama. Friends were asked to consider a gift to the ARRE Foundation when they were invited to attend the event.

Derby Day party

Jamie and Daniel Ordower – parents to Asher, who has Bohring-Opitz Syndrome – hosted a spirited Kentucky Derby-themed party at their home to raise funds for ASXL research. With a costume contest, bourbon tasting, and horse race picks, friends and family near and far were invited to make a donation to the fundraising event with Jamie and Daniel offering to match contributions.

Ride for Rare

The Sacknoff and Allen families—parents and grandparents of brothers Deacon and Drake, who have Bainbridge-Ropers Syndrome—rallied their North Carolina biker community for a special event: the “Ride for Rare” fundraiser. The day featured a group motorcycle ride in honor of Deacon and Drake, followed by an afternoon of spirited biker games where riders showed off their skills with challenges like pushing a barrel with a motorcycle wheel.

Fundraise

Host your own fundraiser online or in person

Host a Facebook or Instagram fundraiser

Host an Awareness Day fundraiser

Host a GivingTuesday fundraiser

Past fundraising events hosted by ASXL families

Get in touch

Discover

Fundraise

Host your own fundraiser online or in person

Host a Facebook or Instagram fundraiser

Host an Awareness Day fundraiser

Host a GivingTuesday fundraiser

Past fundraising events hosted by ASXL families

Get in touch

Discover

Or Get in Touch