What We Do
Purpose, Function, DIPG
A key purpose of the DIPG Treatment Advisory Council is to provide medical and scientific information and advice to children and families facing DIPG. The DIPG-TAC medical protocol is at the heart of the therapeutic matrix provided to parents to consider for their children.
Working together with the family, the parental advisory and medical team at the DIPG Treatment Advisory Council:
- Begin with a short intake session, obtain the underlying medical records, radiographic reports and images, and any other pertinent information (sequencing data, etc.)
- In consultation with one or more specific members of our clinical guidance team, the family will be provided with a treatment strategy that is driven by personalized informatics, research and family objectives and consists of some or all of the DIPG-TAC treatment protocol.
- The DIPG Treatment Advisory Council team will assist the families with communicating with the child’s clinicians and clinical centers, maintain communication as treatment objectives are assessed and altered as necessary, and provide therapeutic pathway options at every step.
- Provide first class contact support at short notice.
- Provide second opinions on MRI’s, analyze and interpret new treatment options and support all strategy initiatives with rigorous pre-clinical testing in our proprietary laboratory.
By working with the team at the DIPG Treatment Advisory Council, for the first time in the history of DIPG, parents are provided with a fully informed approach to creating an actionable multimodal protocol for their child that is based upon the fundamental principle that DIPG must be combatted with as advanced a regimen as can be obtained, supported by results achieved by children using the DIPG-TAC treatment protocols.
The DIPG Treatment Advisory Council does not take control away from a clinical care team. Rather, the DIPG Treatment Advisory Council provides parents with the most complete and informed DIPG treatment guidance and support available. Parents are provided with an analysis with supporting clinical evidence for treatment decisions as well as “on the ground” assistance in navigating the complexities involved and the potential coordination between clinicians and pharma or hospitals if necessary.
The DIPG Treatment
Advisory Council is not a location to obtain a “second opinion” The DIPG
Treatment Advisory Council is the most important place of commencement to try
to save the life of the child following diagnosis.
Key goals of the Treatment Advisory Council are:
- to alleviate the difficulties experienced with navigating the new world of DIPG without sufficient knowledge or expertise.
- to create a medical pathway for clinical care that is
focused not simply upon trying something because it is the only advice provided
or because it is standard of care or “safe”, despite the lack of objective
response data, but to implement all of part of the DIPG-TAC medical protocol allied to professional guidance that is
aimed at better outcomes for children with DIPG and the underlying research
driving these decisions.
Secondary Benefits Envisioned
As the DIPG Treatment
Advisory Council proves the value of the approach for children and the parents,
additional aspects of clinical support guidance may be included to fulfill the
360 approach that most families seek.
It is imperative that the therapeutic and clinical guidance is supported by laboratory research. This component of the approach not only provides extreme legitimacy, more importantly, it removes the DIPG Treatment Advisory Council from competitors in the “second opinion” market by driving therapeutic and clinical recommendations through personal data and individualized markers, wherever available.
In addition, the
laboratory component, through working with the administrative guidance arm of
the DIPG Treatment Advisory Council, can also assist families in the collection
of genetic materials for the creation of PDX models, sequencing and treatment
target analysis so that the end product of the DIPG Treatment Advisory Council
is in fact guided by scientific evidence rather than blind assumptions. The laboratory component must quickly
establish itself (within 2-3 years maximum) as the scientific and intellectual
hub of precision multimodal multi drug medicine guidance for children with
Through the two operational advisers, both of whom have parental experience of DIPG children, families are provided with access to parental experts with some of the most significant experience in building a plural pathway through clinical decisions.
Clinical treatment protocols and single therapy initiatives will be created by the medical guidance team independently, and will be discussed and disseminated with the inclusion of the advisers participating in consultation meetings. By including one of these two parental experts, families are ensured that the recommendations and goals are harmonized and that the dialogue is bi-directional.
The advisers are advocates on the
ground, walking families through the difficult therapeutic choices and drug
recommendations as well as providing first-hand understanding of the emotional
Parents facing diagnosis of DIPG are only provided with the overview of the local or brand name clinical care team administering the treatment. They are not provided with guidance as to the available treatments advocated for by selected clinicians and researchers worldwide who understand that conventional and constrained approaches to treatment are not creating clinical outcomes.
The DIPG Treatment
Advisory Council is an autonomous expert center that provides the medical
guidance for the entire journey to the goal of cure, driven by an underlying
scientific framework of families seeking to break the sustained cycle of death
associated with DIPG.
that the childhood cancer community as a whole would embrace the approach of
the DIPG Treatment Advisory Council, and thus, with revenues, investment and
potentially philanthropic support, we can utilize the evidence from the
creation of this model in a niche market like DIPG and significantly expand
upon it to all forms of childhood cancer providing a larger available
DIPG Treatment Advisory Council Board Team
team members to lead the individual review, analysis of records and clinical
protocol guidance for clients. This is
not a collaborative effort unless so desired.
1 client: 1 medical/clinical member).
Initial Phase Time Requirement: 1 patient would be 1 hour per week maximum.
- Multi person
administration center with dedicated personnel and communication lines to
obtain records; work with families to gain contact with treatment facilities,
physicians, researchers; schedule time with the medical/clinical member and
subsequent follow-up; track each child, from diagnosis onwards, maintaining
contact with families at all times.
Initial Phase Time Requirement; 1 patient would be 1 hour per week on average.
- Parental advisers, vision, family support, fundraising, budget, strategic
development/deployment, community liaison.