December 2, 2025
Giving Tuesday is a global day of generosity and 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 make it easy to host a personalized fundraiser
We provide a day-by-day playbook for your campaign and support you with personalized graphics and resources to make your fundraising efforts easy, personal, and successful:
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Instructions to create your fundraiser on Facebook, Instagram, or a personal giving page
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Personalized graphics featuring your family to help tell your story
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Sample language to promote your fundraiser and ask for support
Choose the fundraising option that’s best for you!
Create a personal fundraising page using our giving platform Bloomerang Fundraising (formerly called Qgiv).
- Easy set up with more room to tell your story with text and pictures
- Great to share with donors who are not on social media
- Optional: Link your campaign to a Facebook fundraiser (donations made to the Facebook fundraiser sync to your fundraising page and count toward your overall goal)
Create your personal fundraising page
Support resources for personal fundraising pages:
- Participant user guide (PDF)
- How to create and edit your personal fundraising page (video)
- Facebook fundraiser participant guide (PDF)
- How to link your personal fundraising page to a Facebook fundraiser (video)
If you need additional support, please email info@arrefoundation.org.
Start a campaign with just one click using your Facebook account. Just set your campaign goal and go!
- Very easy, one-click set up
- Easy to promote to Facebook friends
- Donors can only give via Facebook
Launch your Facebook fundraiser
Step-by-step guide for Facebook fundraisers
1. Launch your campaign
Start the process of creating your campaign via this URL: www.facebook.com/fund/arrefoundation
2. Set your goal
We recommend starting with $500 (you can increase it later if you need to)
3. Select your currency
4. Select the end date for your fundraiser
We recommend December 9, 2025 (one week after GivingTuesday)
5. Choose the title of your fundraiser
This can be whatever you would like! You can keep the default title (“[Your name]’s fundraiser for the ARRE Foundation”) or pick something else that you think will speak to your potential donors.
6. Launch your campaign and start sharing!
Start a new post or story on your Instagram page and add a fundraiser. Set your fundraising goal, add your fundraiser description, and start sharing!
- Simple set up
- Easy to promote to your Instagram followers as a post or story (no landing page for your campaign)
- Donors can only give via Instagram
Below are sample “blurbs” you can personalize to use in your fundraiser to share and promote your campaign. You can mix and match these blurbs together, or use them on their own.
Your personal story
Imagine getting a complicated diagnosis for your child, and then learning there’s no treatment for it. And then imagine learning that there are only a handful of research papers to guide your child’s many doctors as they figure out how to care for the person you love most.
[Optional: Add a brief story of 2-3 sentences about a challenge you’ve experienced due to a lack of knowledge about ASXL-related disorders]
That’s the difficult reality for families like us, and hundreds of other families around the world. But with the ARRE Foundation there is hope for answers.
The ARRE Foundation is bringing together the doctors and researchers needed to build the body of medical knowledge that will guide the care of kids like [love one’s name] and help them live to their fullest potential.
Journey to diagnosis
When we first learned that something was different about [Child’s Name], we had no idea where the journey would take us. It took [months/years] of appointments, tests, and uncertainty before we finally received the diagnosis of an ASXL-related disorder. Getting a name for what was happening was both a relief and overwhelming—because we quickly learned how rare this condition is, and how little information exists to guide care.
What the ARRE Foundation means to our family
Finding the ARRE Foundation felt like finding a lifeline. For the first time, we met families who understood what we were facing and experts who could help us make sense of [Child’s Name]’s complex needs. The ARRE Foundation has given us community, education, and real support during a time when so many families feel alone. We’re proud to stand with an organization that shows up for families like ours every single day.
Why we’re raising funds for the ARRE Foundation
We’re fundraising because the ARRE Foundation is doing work that simply wouldn’t happen otherwise. Before this organization existed, there was almost no coordinated effort to understand ASXL-related disorders. Today, the ARRE Foundation is building the research network, data, and medical knowledge our kids desperately need. A gift to our fundraiser fuels research that can improve care today and lay the groundwork for treatments tomorrow.
Why your support helps improve care for our child
Every step forward in ASXL research has the power to change the future for [Child’s Name]. Right now, doctors must make decisions based on very limited information. With more research, families like ours can have clearer answers, safer care, and real hope for progress. That’s why your support matters so deeply.
The gap the ARRE Foundation fills
Most rare diseases don’t have dedicated organizations—and without the ARRE Foundation, ASXL research simply wouldn’t move forward. The ARRE Foundation connects scientists, supports clinical studies, funds foundational research, and ensures families like ours have a seat at the table. Your gift helps keep that momentum alive.
Hope for the future
We don’t know what the future holds for [Child’s Name], but we do know we want it to be brighter. The ARRE Foundation is working to build the scientific knowledge that can improve quality of life today and eventually lead to treatments. Supporting this fundraiser is one way to help create that future.
Community matters
Before finding the ARRE Foundation, we felt isolated. With so few diagnosed cases worldwide, it’s easy to feel like you’re navigating this alone. The ARRE Foundation gave us connection—to families, clinicians, and researchers who understand ASXL-related disorders and care deeply about progress. Supporting the ARRE Foundation strengthens the entire community that supports [Child’s Name] and kids like them.
GivingTuesday call to action
On GivingTuesday, we’re asking our friends and family to support the work that means the world to us. A donation of any size helps the ARRE Foundation push research forward and support families who are newly navigating this diagnosis. If you’re able, please give in honor of [Child’s Name]—your generosity truly makes a difference.
Tips for your messaging
- Make a clear call to action in your message.
- Make it personal! Tell your story and why supporting research and education is important to you.
- Make it clear what a donor’s gift will support.
Tips for your outreach
- Use different mediums to reach a wide audience. Post to your social media channels, send an email or direct message to friends and family, and consider calling people in your network who may not see your message online.
- Not everyone will see your message or social media posts the day you post them. Email or post (or both!) several times ahead of GivingTuesday to ensure your audience sees your call for support.
- Go Live on Facebook or Instagram to speak directly to your community and ask for their support.
- Thank your donors as they give.
- Donors who don’t wish to give via social media can make a direct donation online or mail a check.
We can support your fundraising efforts with custom graphics for your campaign featuring your loved one.
To request graphics: Reach out to Amanda Johnson to request your custom graphics to use in your fundraiser at amanda@arrefoundation.org.
Once you set up your fundraising page, start spreading the word and asking for support! Use the following calendar as suggested dates to reach your intended audience before, during, and after GivingTuesday.
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November 25: Launch your campaign’s fundraising page
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November 28: Share the link to the video that describes your syndrome
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November 29: Share a family picture and a story about life with your loved one’s syndrome related to this picture. Is it a moment of joy? A challenging one? A hopeful one?
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November 30: Share the “About the ARRE Foundation” video
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December 2: Share the GivingTuesday graphic (see below)
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December 3: Share the thank you graphic (see below)
Additional content and resources you can use with your fundraiser includes:
