Thursday, June 19
3 PM - 5 PM / CTF Volunteer Leadership Council Roundtable
The Volunteer Leadership Council (VLC) will host an in-person Round Table meeting to discuss organizational updates, along with new and ongoing initiatives. Additionally, we will introduce and install our new VLC Executive Committee. This is an excellent opportunity to connect and network with other CTF volunteer leaders. The meeting is open to all current and potential VLC members, as well as future fundraisers.
3 PM - 6 PM / REiNS Summer Meeting: Practical Endpoints
Measuring more real-world impacts of NF in clinical trials and their long-term follow-up - things like employment, education, relationships, living independently, and more.
Open to all patient advocates and clinician researchers
6 PM - 7 PM / Exhibit Hall Reception
Visit our Sponsors in the NF Summit Exhibit Hall. Light refreshments will be served. First-time attendees will receive a special welcome!
7 PM - 9 PM / Welcome Party
Join us for dinner & fun in the historic Blue Room of the Omni Shoreham Hotel where since the 1930s the who’s who of celebrities, from senators and presidents to entertainers like Louis Armstrong, Aretha Franklin, and The Beatles have mingled!
Friday, June 20
8 AM - 1 PM / Concurrent sessions covering a variety of clinical topics
NF1 & Plexiforms
Ocular Health in NF1 and NF2-related Schwannomatosis
Surgical interventions for peripheral schwannomas
Imaging surveillance in NF
NF1: Learning Disabilities, School advocacy, and beyond
2 PM - 4 PM / Afternoon Workshops
NF and Pain - more information coming soon!
Multi-Modal Communication
Development Workshop - Get equipped with the tools needed to make a powerful impact on our mission to End NF!
5 PM - 6 PM / Blue and Green Circle Donor Reception
We warmly invite you to join us for cocktails and light refreshments.
The Blue and Green Circle Giving Society is CTF’s way of recognizing our generous supporters. Members contribute or fundraise $5,000 or more annually to champion our mission. As a valued member, you’ll enjoy a range of benefits tailored to your level of support, including exclusive events like this.
6:30 PM - 9 PM / NF Summit Reception at the National Zoo
Join us for a wild night of connecting and networking! Enjoy dinner and cocktails with the gorgeous animals of DC’s National Zoo.
Located less than a mile from the Omni Shoreham Hotel shuttles will be provided.
Saturday, June 21
8 AM - 1 PM / Concurrent sessions covering a variety of topics
Plenary Session: Patient-Centered Research, presented by the Patient Centered Outcomes Research Institute (PCORI)
Getting Involved in NF Research
Empowerment and Transition, presented by the CTF Junior Board
Technology and Home Safety for the Deaf and HOH with Dr. Tina Childress
The Importance of Mental Health and Resiliency for people with NF
Development: Hear about new ways to energize your fundraising efforts and unlock the potential to raise even more.
2 PM - 4 PM / Afternoon Workshops
“Show & Tell” Deaf technology workshop with Dr. Tina Childress
Diagnosis Disclosure - How and when to share your NF diagnosis
Empowerment Workshop with the CTF Junior Board
Mental Health in NF - Practical tools for building resilience
5 PM - 6 PM / Curated Poster Session for NF Summit Attendees
NF Summit attendees are invited to a curated poster session with NF clinicians and researchers presenting their work at the 2025 NF Conference. A unique opportunity to discuss current NF research with the researchers themselves! Light refreshments will be served.
6 PM - 8 PM / Combined Saturday Evening Reception
A cocktail reception hosted by the Children's Tumor Foundation at the Omni Shoreham, welcoming both NF Summit and NF Conference attendees.
Teen Space
Friday and Saturday
Expanding on the success of our Teen Space in 2024 we will again be bringing dedicated programming to the NF Summit for teens with NF and their siblings. Activities include interactive team games with the CTF Junior Board, presentations from NF experts geared just for teens, ‘Ask Me Anything’ sessions with NF experts, “field trips” to enjoy the hotel pool, and more! Must be 12 years of age or older to participate.
Breakfast and lunch are included on Friday and Saturday.
This agenda was last updated on 1/16/25 and is subject to change.
