September 21, 2023
JW Marriott, Washington, DC

Understanding Pediatric Brain Tumors –
Real Talk by  Nicole Lyons, Columbia University;

Penn Terrace
Pizza and Salad

This optional lunch & learn session sets the tone for the BrainStorm Summit and level sets with the basics of brain anatomy, omics, and cell biology.  This session will provide foundational understanding for the expected speaker topics during the summit. Nikki explains in real terms the cells within the brain structure and how cancer integrates with the healthy brain.  Receive a glossary of terms and diagrams to orient those who are not medical professionals to the topics presented during the BrainStorm Summit.

Continue to join Nikki Lyons for monthly primers on Understanding Pediatric Brain Tumors – Real Talk in  the Tough2gether Childhood Cancer online community.

Welcome – with Special Guest James Orriga, Lad in the Battle Salon I, II  
Lisa Ward, Co-Founder Tough2gether Foundation
Ginny McLean, Gift from a Child


Keynote Address:  Dr. Elaine Mardis, PhD – the Genomics of Pediatric Brain Tumors
Salon I, II               

Omics, Multiomics, Genomics are buzzwords of the decade helping define and differentiate cancerous tumor markers, drivers and suppressions.  What do these mean, how are they used in pediatric brain cancer, how are they recorded and what should families do to use the best information available in the treatment of pediatric brain cancer.  We hear from Dr. Elaine Mardis, MD, PhD, Nationwide Hospital.. 

2:00 – 3:10 Intention in Advocacy
Salon II                  

Mike Henry, Government Affairs,  PBTF, moderator
Sara Millburg, Alliance for Childhood Cancer President and Government Affairs,  St. Baldricks
Ellyn Miller, Smashing Walnuts Co-Founder and advocate for Gabriella Miller Kids First 1.0 and 2.0
Danielle Leach, Chief of Government Relations and Advocacy, National Brain Tumor Foundation
Dean Crowe, Rally! Foundation founder and president

2:00 – 3:10 Pediatric Brain Tumors 101: Many Different Tumors; One Community
Salon H J

Dr. Cassie Kline, MD, MAS, Children’s Hospital of Philadelphia
Dr. Gene Hwang, MD, Children’s National

There are over 120 different types of pediatric brain tumors, and while diagnoses differ, there are many points of commonality and community. So how do we, in the collective (practitioner and family), identify those common points and focus on them, and from there, how do we also use what we’ve learned in successfully developing new treatments for some cancers to fuel better treatments for all brain tumors, some which are fatal and many of which are not, but remain difficult to treat, cure and still have an incredibly deleterious impact on the children who are diagnosed.

 Refreshment Break in Foyer Sponsored by —– Bristol Meyers Squibb

                    Enjoy Brownies, Fresh Cut Fruit, Soft pretzels with cheese and visit sponsor tables

3:30 – 4:30 –
Advances in Imaging Technology & Analysis
Salon II

Dr. Ali Nabavizadeh, MD
, Univ. of PA, moderator
Dr. Ashwini Davison, MD, Amazon Web Services
Dr. Marwa Ismail, PhD, Univ of Wisconsin
Dr. Adam Resnick, PhD, Children’s Brain Tumor Network
Dr. Carl Koschmann, MD, University of Michigan
Dr. Misha Mehta, PhD, Parent Advocate, Neev Kolte & Brave Ronil Foundation
Imaging plays a central role in neuro-oncology including primary diagnosis, treatment planning, and surveillance of tumors. The emergence of quantitative imaging, molecular imaging, and radiomics provided an unprecedented opportunity to have more powerful tools for our brain tumor patients. In this session, we provide an overall presentation of our efforts in these areas and address existing challenges and future opportunities.

3:30 – 4:30   –
Holding Space for Emotional Health in Advocacy  
Salon H & J   
Dr Megan Schaefer, Pediatric Psychologist, Nationwide Children’s Hospital, moderator
Grace Wethor, survivor and advocate
Michael Muldoon, survivor and advocate
Aubrey Eline, mother and advocate
Cindy Campbell, bereaved mother and advocate

Advocacy work can be emotionally draining. We can avoid burning out if we make time for our emotional wellbeing.  Our panel will talk about the ways they take care of their mental health while working on advocacy initiatives.

The Benefits, Process of Navigating Families and Outcomes from Tissue Donation – Gift From a Child
Salon K (no livestream)

Ginny McLean, moderator
Dr. Melissa Mark, MD Director of the brain tumor program at Children’s Hospital of The King’s Daughters, Virginia
Patti Gustafson, Gift from a Child
Al Gustafson, Gift from a Child

Gift from a Child presents this interactive opportunity to understand the importance of sharing tissue to fuel research. Break into small groups to facilitate open discussion for both families and physician scientists. Families who have donated tissue will be recognized with a small gift

If you are interested in the services of Gift from a Child, or your child donated precious tumor tissue, don’t miss this opportunity to ask questions, learn how the tissue is leading discoveries in tumor treatment and how you can help other families consider this important gift.

4:35 – 5:30 


Salon K (no livestream)

New Treatment Concepts  for Pediatric Brain Cancer

4:35 to 5:00

Bionaut :  Dr. William Loundon

Safety Evaluation of the motion of the untethered micro-robot traversing large animal cortex 
Contemporary techniques for deep brain access rely upon transcranial portals of entry (burr holes), many of which were defined in the early to mid-1900s.  Skull base, anterior brain stem and low midline structures continue to represent particularly challenging targets to access for neurosurgical procedures and accurate drug delivery utilizing these access vectors. Novel minimally invasive therapeutic strategies including specialized delivery systems

such as convection-enhanced delivery (CED) have been proposed but continue to fall short of therapeutic goals.  Safe access to many eloquent targets, allowing microsurgical procedures and/or enhanced delivery of therapeutic modalities, remains a major unmet need for many CNS pathologies. Bionaut Labs has developed a first in class modular microrobotic platform for performing localized delivery of diverse therapeutics in vivo or microsurgical utilizing a completely untethered microrobot which navigates through CSF and brain tissue. Brain stem glioma/ diffuse midline glioma has been selected for the first clinical trial utilizing the Bionaut system for drug delivery


5:00 to 5:30

NKORE – Tracy Ryan 

Overview of NKore

As an expert in the field of cannabinoid medicine, and now the cofounder of a Natural Killer Cell immunotherapy and diagnostics company, Tracy takes you on her decade long journey to save her daughter Sophie’s life from her incurable, low-grade brain tumor. After Sophie received 2 infusions of her father’s NK Cells, and saw shrinkage for 16 months post infusion, NKore is now slated to begin human trials this year.

4:35  – 5:30



Salon II

Key Components of a Patient Continuum that Works.

DIPG OneLink  Lisa Ward, JD Tough2gether Foundation, patient advocate

The DIPG OneLink unveiled today creates a comprehensive roadmap for those new to the fight, in the fight and those fighting for others.  From links to nurse navigation, national tumor board, best practices, sharing your patient data, financial assistance, opportunities for advocacy, emotional support and the NEW Tough2gether Childhood Cancer Online Community a private patient online community.For the first time there are clear gateways to sharing your patient data with researchers with expectations of access, privacy and response to how data is used. By

families for families the journey of DIPG DMG is now much clearer.

My DIPG Navigator Ann Friedholm, CEO ChadTough Defeat DIPG and

DIPG DMG National Tumor BoardCarl Koschmann, Univ. of Michigan

Gift from a Child
 The Impact of Gift from a Child on local programs supporting families. how to leverage the program to facilitate increased tissue for research

Ginny McLean, Communications Director, Gift from a Child

Dr. Melissa Mark MD, Director of the brain tumor program at Children’s Hospital of The King’s Daughters, Virginia

:00 to 5:30

SonALAsense: Dr. Ely Benaim

Overview of SonALAsense

Dr. Ely Benaim of SonALAsense is presenting an overview of sonodynamic therapy (SDT), a

groundbreaking treatment technology with transformative potential for combating various forms of

cancer, particularly pediatric diffuse intrinsic pontine glioma (DIPG). SDT is a promising avenue that

combines aminolevulinic acid (ALA) and low-intensity focused ultrasound to selectively target and treat

tumor cells. Dr. Benaim will discuss the underlying principles of SDT, its potential applications in oncology, and share preliminary findings from their ongoing Phase 1/2 clinical trial in newly diagnosed

DIPG, SDT-201.

Salon III, II, I
Welcome by Jay West, BioSkryb Genomics
Introductions of Distinguished Guests by Danielle Leach, NBTS Government Affairs
Thank you for support Nancy Goodman and Ellyn Miller, Founder of Smashing Walnuts

Sponsored By

BrainStorm Summit Social Events!

Men’s Night Out: 7:00 – 10:00 Guys Night Out – 5 Iron, 575 7th St NW, Washington, DC

Your Hosts: Roger Ward, Scott Woodworth, Brian Sieck and Antonio Halek

We know what happens with a golf club or cold drink in your hand, the guys start to get to know each other better.  That’s the plan for tonight at our Guys Night Out for conference attendees.  Have fun down the street with others here to fight pediatric brain cancer.

Ladies’ Night In:

Enjoy a fun, energy packed casual event for the women of the BrainStorm Summit.  Cash bar and fun food provided. 

We’ll open up the room for you to pick and choose in traditional women’s fair style your favorite ways to relax.  Here are some offerings you can plan to enjoy:

  • Cristi Hausserman – Norwex consultant – – A sampling of chemical free home care – Touch, Smell, and Try Norwex products at your leisure – no pressure to buy – just the chance to try.
  • Jenica Harden – A therapeutic neuromapping art activity – let your mind relax and create a stream of consciousness unique to you and your experiences guide your artistic expression.
  • Melissa Moore – fun sampling of Red Aspen a family owned makeup and face care company giving back to pediatric brain cancer – no pressure to buy – truly a gift to enjoy.
  • Annette Zita – demo of the Tough2gether Childhood Cancer online community – let’s get you registered, connected and enjoying each other!
  • Chair Massages, sponsored by Tough2gether Foundation and Mary’s Magical Moment.  We invite you to indulge in a moment of relaxation and release of all your tensions.
  • DIPG OneLink – Check out the new patient continuum available for families to share trusted resources, support, community, and their patient data.
  • Marcel Cairo – Have you wondered about mediumship but been nervous about booking a reading?  Have you wondered if you could be receiving information from the other side, but are not sure?  Have you found the use of a medium to be helpful or therapeutic in your grief?  Marcel Cairo will explain how mediums receive messages and how you also can open your consciousness to those just outside of our view.  Participate in a small group discussion with Marcel, and if later this weekend you wish to hear more, take the opportunity with a small group of 10-15.  Learn more at www.the Good or read his reviews at Yelp.
  • Amanda DeCicco, Author of The Hero Within:  Every Hero Has a Story.  Visit with author and enjoy a reading from her beautiful book which tells of raising her son as a teen mother only to bear  the heartache of walking him home at age 7 from DIPG. A beautiful story of learning to love, let go and let God.
  • Tables with cards, games and plenty of room to meet up with old friends and make new ones. 

Sleep Well – Registration and Breakfast start Friday at 7:00 am

Thank You to Our Sponsors