Sponsorship opportunities
ASXL Research Symposium & Family Conference
June 25–28, 2026 · Ann Arbor, Michigan
ASXL-related disorders are rare, complex, and lack targeted treatments. The ARRE Foundation, founded in 2018 by ASXL parents, is building the research infrastructure to change that — while supporting the estimated 750–1,000 diagnosed families navigating these disorders right now. The 2026 ASXL Research Symposium and Family Conference unites leading researchers, clinicians, and ASXL families in a uniquely productive gathering: part scientific symposium, part family education program, part community celebration, and part clinical research data collection effort.
We invite you to be part of what comes next.
The ARRE Foundation & ASXL-Related Disorders
Founded in 2018 by parents of children with ASXL-related disorders, the ARRE Foundation is a research-focused patient advocacy organization dedicated to three ultra-rare neurodevelopmental conditions: Bohring-Opitz Syndrome (ASXL1), Shashi-Pena Syndrome (ASXL2), and Bainbridge-Ropers Syndrome (ASXL3). Our mission:
Supporting families today
Through education, connection, and access to clinical and scientific expertise.
Building research infrastructure
The data, biosamples, collaborations, and scientific community needed to develop effective treatments.
ASXL-related disorders affect an estimated 750–1,000 individuals globally. These complex, multisystem disorders cause developmental delay, intellectual disability, feeding challenges, seizures, congenital malformations, and behavioral challenges. Despite growing research interest, there are currently no known treatment pathways and limited published clinical guidance. Learn more about ASXL research →
The ASXL genes present a compelling opportunity to understand broader mechanisms of chromatin remodeling, making ASXL-related disorders highly relevant to pipelines targeting epigenetic dysregulation across oncology, neurodevelopment, and beyond. The ASXL proteins are integral components of the Polycomb Repressive Deubiquitinase (PR-DUB) complex, recruiting BAP1 to catalyze removal of monoubiquitin from histone H2A at lysine 119 — a key mark governing transcriptional repression — and interact with PRC1 and PRC2. Somatic ASXL variants in hematologic and solid tumors are associated with more aggressive disease and worse outcomes, underscoring the translational significance of these genes across both pediatric and adult contexts.
About the 2026 ASXL Research Symposium & Family Conference
A central pillar of the ARRE Foundation’s strategy is expanding research interest and increasing family engagement. The ASXL Research Symposium is held annually, bringing together the world’s leading scientists and medical professionals. Every two years, it is held in conjunction with the ASXL Family Conference — creating a combined event that advances research on multiple fronts simultaneously. A defining feature is the rare opportunity for families to participate directly in critical in-person research — including phenotyping studies, biosample collection, and focus groups — that cannot be replicated at scale in any other setting.
ASXL Research Symposium
A scientific meeting for researchers and medical professionals to share data and resources and cultivate new collaborations. Programming includes a poster session on Thursday evening and an invitation-only dinner with speakers and research leaders on Wednesday evening.
ASXL Family Conference
A medical education program for families and caregivers built around community connection and direct research participation. Families leave better equipped to manage complex care, with a stronger support network and a deeper understanding of the science advancing toward treatments. Includes Pizza & Movie Night on Saturday evening.
ASXL Community Celebration Dinner 🦸
A superhero-themed dinner that brings the medical and scientific community and ASXL families together to celebrate that it takes all of us, working together, to advance research and improve lives.
Tiers & Benefits
Choose the tier that best fits your organization’s goals and budget. Custom and combination packages are available. Sponsors are recognized in the tier matching their total financial commitment. See the opportunities section below for additional named sponsorship benefits.
📱 Scroll right to see all tier columns, or view summaries below the table.| Benefit | Diamond | Platinum | Gold | Silver | Bronze | Partner |
|---|---|---|---|---|---|---|
| Investment | $15,000 | $10,000 | $5,000 | $2,500 | $1,000 | $500 |
| Visibility & Recognition — Pre-Event | ||||||
| Logo/name on conference website | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ |
| Logo/name in emails to registered attendees | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ |
| Group recognition post — ARRE social media1 | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ |
| Individual recognition posts — ARRE social media1 | 3 posts | 2 posts | 1 post | — | — | — |
| During Event | ||||||
| Logo/name on walk-in & break slides | Individual | Individual | Individual | Group | Group | Group |
| Logo on onsite printed event signage | ✓ | ✓ | ✓ | ✓ | ✓ | — |
| Product/program info in registration packets | ✓ | ✓ | ✓ | — | — | — |
| Tabletop exhibit booth | ✓ | ✓ | — | — | — | — |
| Post-Event | ||||||
| Recognition in post-event blog post summary | Specific thanks | Specific thanks | ✓ | ✓ | ✓ | ✓ |
| Logo/name in post-event email recap to full email list | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ |
| Logo/name in July 2026 newsletter to full email list | ✓ | ✓ | ✓ | ✓ | ✓ | — |
| Event Registration | ||||||
| ASXL Research Symposium registrations | 4 | 3 | 2 | 1 | 1 | — |
| ASXL Family Conference registrations | 4 | 3 | 2 | 1 | 1 | — |
| Dinners & Networking | ||||||
| Invited Speakers Dinner with research KOLs — Wed., June 24 (invite only) | 3 seats | 2 seats | 1 seat | — | — | — |
| ASXL Community Celebration Dinner — Fri., June 26 | 2 tables of 8 | 1 table of 8 | 4 tickets | 2 tickets | — | — |
| ASXL Pizza & Movie Night — Sat., June 27 | 1 table of 8 | 6 tickets | 4 tickets | 2 tickets | — | — |
1 Includes Facebook, Instagram, and LinkedIn.
- Logo/name on website, all emails, signage & registration packets
- 3 individual social media recognition posts
- Individual feature on walk-in & break slides
- Tabletop exhibit booth
- Specific thanks in post-event blog, email recap & July newsletter
- 4 Research Symposium + 4 Family Conference registrations
- 3 seats: Invited Speakers Dinner (invite only)
- 2 reserved tables of 8: Community Celebration Dinner
- 1 table of 8: Pizza & Movie Night
- Logo/name on website, all emails, signage & registration packets
- 2 individual social media recognition posts
- Individual feature on walk-in & break slides
- Tabletop exhibit booth
- Specific thanks in post-event blog, email recap & July newsletter
- 3 Research Symposium + 3 Family Conference registrations
- 2 seats: Invited Speakers Dinner (invite only)
- 1 reserved table of 8: Community Celebration Dinner
- 6 tickets: Pizza & Movie Night
- Logo/name on website, all emails, signage & registration packets
- 1 individual social media recognition post
- Individual feature on walk-in & break slides
- Recognition in post-event blog, email recap & July newsletter
- 2 Research Symposium + 2 Family Conference registrations
- 1 seat: Invited Speakers Dinner (invite only)
- 4 tickets: Community Celebration Dinner
- 4 tickets: Pizza & Movie Night
- Logo/name on website, all emails & signage
- Group social media recognition post
- Group listing on walk-in & break slides
- Recognition in post-event blog, email recap & July newsletter
- 1 Research Symposium + 1 Family Conference registration
- 2 tickets: Community Celebration Dinner
- 2 tickets: Pizza & Movie Night
- Logo/name on website, all emails & signage
- Group social media recognition post
- Group listing on walk-in & break slides
- Recognition in post-event blog, email recap & July newsletter
- 1 Research Symposium + 1 Family Conference registration
- Logo/name on website & all emails
- Group social media recognition post
- Group listing on walk-in & break slides
- Recognition in post-event blog & email recap
1 Social media includes Facebook, Instagram, and LinkedIn.
Opportunities for Support
Sponsorships may be combined or purchased independently. Opportunities are first-come, first-served. Sponsors are recognized in the benefit tier matching their total financial commitment.
Event Underwriting
| Opportunity | Description | Investment |
|---|---|---|
| General Event Support | General underwriting of the entire 2026 ASXL Research Symposium and Family Conference. | Any amount |
| Community Celebration Dinner: Presenting Sponsor | Primary underwriter of the evening dinner. Includes all Diamond Tier benefits, including 2 reserved tables of 8. | $15,000 |
| Community Celebration Dinner: Cocktail Hour Sponsor 1 available | Exclusive sponsor of the pre-dinner cocktail reception. Logo on cocktail hour signage and verbal recognition during the event. | $5,000 |
| Poster Reception Sponsor 1 available | Sponsor the ASXL Research Symposium Poster Reception on Thursday, June 25. Logo on reception signage and verbal recognition during the Poster Session Lightning Round. | $5,000 |
| Pizza & Movie Night Sponsor 4 available | Sponsor the family-friendly evening of pizza and a movie for attendees of all ages on Saturday, June 27. Logo on signage and verbal recognition during the event. | $2,500 |
| Family Lounge — Full Sponsor 1 available | Exclusive sponsor of the Family Lounge for all four days (Thursday–Sunday). Logo on lounge signage. | $5,000 |
| Family Lounge — Daily Sponsor 4 available | Sponsor the Family Lounge by the day. Logo on lounge signage for your sponsored day(s). | $1,500/day |
| Young Investigator Travel Grant 8 available | Support the next generation of ASXL researchers by funding a travel grant for an early-career investigator to attend the symposium and connect directly with ASXL families. | $1,500/grant |
À La Carte — Reserved Dinner Table
Secure a reserved table at the superhero-themed ASXL Community Celebration Dinner on Friday, June 26. Benefits are limited to those listed below; tiered sponsorship benefits do not apply to à la carte purchases.
| Opportunity | Description | Investment |
|---|---|---|
| Reserved Dinner Table | One reserved table of 8 at the ASXL Community Celebration Dinner. Includes name/logo on the table card and recognition in the dinner program. | $2,500 |
| Additional Dinner Seats | Individual seats at the Community Celebration Dinner (general seating). | Pricing varies |
In-Kind Contributions
In-kind contributions are recognized at the benefit tier matching the estimated fair market value of the contribution.
| Opportunity | Description | Investment |
|---|---|---|
| In-Kind: Family Lounge Item | Donate a product or item for use in the Family Lounge throughout the conference (snacks, comfort items, printed resources, activity supplies). Minimum value: $250. | In-Kind |
| In-Kind: Family Attendee Giveaway | Donate an item distributed to all registered family attendees as a keepsake or useful resource. Quantity must cover all registered families. Minimum value: $500. | In-Kind |
| Other In-Kind Options | We welcome creative ideas for in-kind contributions that help execute a successful event and create a welcoming environment for all attendees. | In-Kind |
What your support catalyzes
The ASXL Research Symposium and Family Conference delivers meaningful, lasting returns for the ASXL community with every gathering.
- ✦Equips families with strategies for managing complex, multisystem care — families leave with more tools, more knowledge, and a stronger support network
- ✦Introduces investigators directly to families living with ASXL-related disorders, deepening their commitment to their research through the ARRE Foundation’s travel grant program
- ✦Expands family volunteer engagement and fundraising, growing the ARRE Foundation’s capacity to fund and coordinate research
- ✦Provides a dedicated venue for scientific exchange that seeds new ideas and new collaborations between investigators from different disciplines and institutions
- ✦Creates direct opportunities for families to enroll in critical research studies, contributing phenotypic data and biological samples essential to scientific progress
Become a sponsor
We warmly welcome conversations with individuals and organizations interested in supporting the 2026 ASXL Research Symposium and Family Conference. We are happy to build a custom package aligned with your goals.
Sponsorship Notes & Policies
- Sponsorship opportunities are available on a first-come, first-served basis. Some are exclusive.
- Sponsorship commitments are confirmed upon receipt of a signed agreement and payment.
- The ARRE Foundation is a 501(c)(3) nonprofit organization (Tax ID 82-3890665). Contributions may be tax-deductible to the extent permitted by law.
- Sponsorship does not influence the scientific or educational content of the conference. The ARRE Foundation retains full editorial control over all programming.
- Custom and combination packages are available — contact Amanda to discuss options tailored to your organization.