Diffuse Intrinsic Pontine Glioma

Forum Chairs

Northwestern University
The Hospital for Sick Kids

Forum Description

DIPG is a rare incurable childhood brain cancer. Unfortunately, the standard of care has not significantly improved in over 50 years with focal radiation being the standard of care. This is in stark contrast to the improved treatments for many other cancers like melanoma, lung cancer, kidney cancer, leukemia, and neuroblastoma. Recent analysis of DIPG tumor tissue has identified some of the main genetic events that drive DIPG formation.

This powerful piece of knowledge, along with other advances such as the development of model systems, and the increasing use of biopsies as part of the diagnostic work-up for children with DIPG will eventually lead to effective therapies. This cannot be done however without foundations like the Forbeck Foundation. The Forbeck Foundation is world-renowned for supporting an innovative discussion forum where approximately 15 scientists, in an intimate setting, have the opportunity to discuss unpublished research results. Bringing together diverse experts together like this, to learn from and challenge each other, is an innovative approach that will no doubt yield real progress for DIPG.

Walk The Lake For Kira Faith

This year the Kira Spedale Foundation is collaborating with the Forbeck Foundation to sponsor a scientific forum to tackle DIPG. Walk the Lake will be the culmination of the consensus meeting. To learn more about the Kira Spedale Foundation please click here.

Forum Summary

In Summary (very briefly) how would you explain what was covered in this forum. Simplest terms.
The Forum was focused on a rare childhood brain cancer called DIPG, which stands for diffuse intrinsic pontine glioma. It is one of the most difficult cancers to treat due to its location and its infiltrating nature, so it cannot be removed with surgery. This is why it is still incurable in 2019. We brought in a diverse group of physicians and scientists that normally does not meet. This included neuro-oncologists, neurosurgeons, neuropathologists and basic scientists that study chromatin biology, tumor microenvironment, the challenges of delivering drugs to the brain, as well as those developing innovative approaches for this tumor. We discussed what we currently know about DIPG, what questions remain to be tackled, and what are barriers for the development of effective therapies and how to overcome them.

Why was this meeting relevant now?
The meeting was relevant now because there have been lots of scientific advances regarding the biology of DIPG but this new knowledge has yet to yield improved therapies for patients with DIPG. We met to address this gap between the science and the clinical management of children with DIPG and what steps can be taken to accelerate the quest for cure.

What came out of this meeting? Conceptual, collaborations any papers or experiments.
We are planning to write a review article on DIPG based on the discussions we had on some of the overarching questions in the field. The article will review the state of knowledge, address several important questions in the field highlighting areas of consensus or disagreement between attendees as well as summarize some new approaches in development. In particular, we will attempt to address a critical question regarding new therapies: what scientific knowledge regarding a specific new therapy is needed to have in advance of initiating a clinical trial for children with DIPG. As currently there are too many clinical trials for children with DIPG and the scientific rationale for all of these is quite variable.

What do you see developing in this field from this meeting?
I do believe that new collaborations will form from this meeting as well as conceptual advances. Several attendees already mentioned that they were not aware of the research conducted by some of the attendees and plan to reach out to them to potentially work together.

How does this impact patients today?
DIPG Families with children with DIPG currently struggle with choosing specific clinical trials for their children. It is possible that the dissemination of our future article will be informative to some families, and as a result, they will more critically assess the state of scientific knowledge of novel therapies to help them decide the best trial for their child. It makes sense that clinical trials based upon the most rigorous scientific rationale enroll patients the fastest.

Venue & Travel Information

Geneva National Resort

1221 Geneva National Avenue, South

Lake Geneva, WI 53147

Geneva National Resort

Travel Forms

Travel forms are due 30 days prior to the start of the meeting to allow enough time to plan transportation.

Milwaukee's General Mitchell International Airport (MKE) is the preferred airport as it is only 45 minutes from the meeting location.

  • Arrivals - Thursday at 1 PM, 3 PM and 5 PM
  • Departures - Sunday at 10 AM and 12 PM

Chicago's O'Hare Airport (ORD) is 1 1/2 hours from the meeting location without traffic. The Foundation can only accommodate 1 pick up per day at O'Hare. If you absolutely must fly into O'Hare (ie: International Flights) the Foundation will have the following pick up times at O'Hare:

  • Arrivals - Thursday at 3 PM
  • Departures - Sunday at 10 AM

Any other arrival times at Chicago's O'Hare airport must be arranged and paid for by the individual.

September 3, 2019
submit travel form

Travel Policy

Please familiarize yourself with our policies and procedures for travel. We truly appreciate you taking the time to participate in this meeting. As you make your plans, please remember that we are a nonprofit organization dependent on donations and volunteers. We do NOT pay for upgrades, change fees, incurred costs resulting from a flight change, transportation to or from your local (home side) airport, meals or other incidentals.

  • Travel Confirmation will be sent out within 1 week of the meeting. This will include a hotel confirmation number, if there is one, and airport transfer details. We have to wait until we receive almost everyone’s travel to book airport transfer. Due to frequent airline changes, we wait until the week of the meeting to send this out.
  • Airport transfer is provided by Foundation staff, volunteers or arranged shuttle at specific times. If you opt to utilize Foundation airport transportation on your travel form, please be patient in receiving this information. We will send it to the week of the meeting.
  • Speaker agenda is not sent out prior to the meeting. It will be provided upon arrival in the meeting packet. We do not tell people when they are speaking because we expect everyone to attend all sessions. Sessions are all day Friday and Saturday.
  • REMINDER: We do not reimburse for home side airport transfer or incidentals while traveling. We will not honor miscellaneous receipts sent for these expenses.
  • Spouses are welcome to come with you at their own cost but are not allowed to attend the meeting. Please no children.

What the Foundation Pays

Accommodations and meals are provided by the foundation during the meeting. Airfare will be covered only if booked through our travel agent. The Foundation will also cover airport transportation on the meeting side at the designated shuttle times. You can select not to utilize Foundation arranged transportation at your own expense when completing the travel form. Once your travel form is received your accommodations and airport transfer will be confirmed. Please let us know of any food allergies or other information we should be aware of on the travel forms.

  • If you would like your airfare covered by the Foundation, you must book with our travel agent. Note we do not cover upgrades, changes, late bookings, etc.
  • Flights must be booked at least 30 days prior to the meeting to confirm your accommodations and airport transfer.
  • As a nonprofit we utilize volunteers and other methods to maximize our efforts (or our donor support) when making accommodations and arranging ground transportation. Ground transportation will be provided upon your arrival either by a foundation volunteer or arranged shuttle. You will be provided airport transportation information the week of the meeting. We do not reimburse for home side airport transfer or incidentals while traveling.


Abstracts are due 30 days prior to the start of the meeting to allow enough time to prepare the meeting book.

The abstracts should be only one or two paragraphs outlining the theme of your presentation and should reflect the objective and spirit of the meeting (see above). Abstracts will be circulated about one week before the meeting. The meeting organizer will start requesting them a month before the meeting.

abstracts DUE:
September 3, 2019
submit abstract

Meeting Structure

The meeting structure has been developed over years of experience.

  • Participants have approximately 45 minutes, depending on the number of participants, for their presentation and discussion. The presentation is meant as a conversation start and should last about twenty minutes briefly covering background information and areas that are new or need further input. This should be structured in such a way as to lead to a lively discussion. Participants are encouraged to interrupt to ask questions or start discussions.
  • A MAXIMUM of 5 slide equivalents per presentation is allowed (Power point slides should not contain more than one graph or gel per slide and no more than 5 bullet points to stress the points being made by the presenter.) We appreciate cooperation with the spirit of this guideline. Handouts are welcome but should be distributed before sessions.
  • Everyone is expected to actively participate in every session and discussions.
  • The time spent at the meeting is relatively short, so please be familiar with papers received prior to the meeting.
  • It is very important that you commit to all sessions of the 2 days of meetings.

Forbeck Scholars Participation

Scholars are selected for each Forbeck Forum. These are outstanding junior clinical or post-doctoral fellows selected based on the quality and relevance of science.

  • Scholars present for 30-45 minutes, depending on the number of participants
  • The same presentation rules apply for scholars
  • After the Forum you are selected to attend, you will attend three years of Scholar Retreats held in Lake Geneva, WI. If you attend a Fall Forum, you will attend the Spring Retreat. If you attend a Spring Forum you will attend a Fall Retreat.
  • Scholars are selected by the Foundation Scientific Advisory Board and peer reviewers selected from past Forbeck Scholars.

General Program

The outline below illustrates a typical program schedule. You will receive a complete schedule, including speaking times, the Thursday the meeting starts.

1:00 PM Arrivals
6:30 PM Cocktails (opt'l)
7:30 PM Dinner
7:00 AM Breakfast
8:00 AM Scientific Sessions
12:00 PM Lunch
1:30 PM Scientific Sessions
6:30 PM Cocktails & Dinner
7:00 AM Breakfast
8:00 AM Scientific Sessions
12:00 PM Lunch
1:30 PM Scientific Sessions
6:30 PM Cocktails & Dinner
7:00 AM Breakfast
8:00 AM Departures

Forum Participants

Weill Cornell Medicine
University of California San Francisco
Children's Hospital of Philadelphia
Seattle Childrens Research Institute
David J.
Mayo Clinic
Memorial Sloan Kettering Cancer Center
Pharm D, PhD
University of Minnesota
Emory University
Oregon Health & Sciences University
Paul S.
UC Davis Health
University of California, San Francisco
Northwestern, Feinberg School of Medicine
Seattle Children's Hospital / Fred Hutch

Forum Scholars

Laura Banaszynski, PhD
UT Southwestern
Jessica Foster, MD
Children's Hospital of Philadelphia
Cassie Kline, MD, MAS
The Children's Hospital of Philadelphia
Nneka Mbah, PhD
University of Michigan
Jay Sarthy, MD, PhD
Fred Hutchinson Cancer Research Center