Follow us on Facebook and Instagram to stay up-to-date on all the latest ASXL community news. Help spread awareness by liking and resharing our posts with your own network.
Set up a fundraiser on Facebook or Instagram to benefit the ARRE Foundation with just a few clicks. These easy online fundraisers are a great way to raise funds for an awareness day or a special occasion like a birthday.
If you shop at Walmart, you can round up your order to benefit the ARRE Foundation and ASXL research. From the Walmart app or your online Walmart account, go to Account, then Giving and Impact, and search for “ASXL.” Then, turn off the location filter to find us!
By showing the size and strength of our community, we can attract researchers, funders, and pharmaceutical partners—and move closer to treatments. Take the ASXL Census and help us show the world we’re here, we’re united, and we’re ready for progress.
Participating in an ASXL research study is a powerful way to help uncover answers about these rare, complex disorders and move us closer to better care and treatments. Every family’s experience adds valuable insight that can drive progress for the entire ASXL community.
These volunteer opportunities require a bit more of a time commitment but are still flexible. If any of these opportunities are of interest to you, please contact Sarah Scott, Family Education and Engagement Coordinator, at sarah@arrefoundation.org, or fill out the volunteer interest form.
This is an informal group of parents and caregivers we reach out to when we need feedback or advice on new family resources. We’ll put you on an email list to receive notifications of new resources to review and assign a deadline.
This is a role for parents and caregivers to help welcome new ASXL families to our community, respond to questions in the Facebook support groups with ARRE Foundation resources, and encourage other families to participate in online events, surveys, and research opportunities. Family ambassadors are required to review a briefing document on ARRE Foundation resources and sign our volunteer agreement.
If you speak or can read/write in English and another language, we are building a list of family volunteers who can help connect with ASXL families who do not speak or read English. This is a critical role for creating communication in our global ASXL community.
We are always looking for parents and caregivers to share their expertise with other ASXL families on a variety of topics. If you have an idea for a webinar or would be open to speaking to other families, please get in touch!
We rely on volunteers for many of the professional services and expertise that keep our organization running and growing. If you have any of these specific areas of expertise, we would love to connect with you to explore how you might be able to lend your skills and experience to advancing our mission.
If any of these opportunities are of interest to you, please contact Amanda Johnson, Executive Director, at amanda@arrefoundation.org, or fill out the volunteer interest form.
