DIPG Family Facebook Groups
If you are affected by DIPG and on social media then you may want to join several groups as a resource for information...a word of warning for the newly diagnosed DIPG families, these are not for the faint of heart.
You will read distressing accounts of many children during their battle and those that lose their lives usually all within a short space of time.
There are also some examples of HOPE, some longer term survivors who have done relatively nothing in some cases, and many differing treatment accounts from all around the world are discussed.
What will become apparent quickly is that biologically no two children are the same, what appears to work for one will not have the same effect in another. We need to know exactly 'how?' and 'why?' these children are different.
There is also a lot of anger (and rightly so) because options are so very few and far between . In the case of experimental therapies they are also very expensive and not covered by insurance ( or NHS)
The personal view of Abbie's Army is that ONLY research will get us there but this also has to be met with some other changes in regulatory conditions!
Ultimately only research output can provide the 'data ' and critical mass of information needed for guidance of any new methods to be adopted and approved that will help all children affected in the future. Until we fully understand this disease we cannot stop it, and ultimately although we want to be 'curing' intially even 'managing' the condition would still be a huge milestone!
Many in these groups are seeking funding for treatment, unfortunately we cannot assist as this does not cover our aims for 'public benefit' , it may also not help the 'bigger picture' for DIPG patients either. Where agents are 'non disclosed' , and there is a variation from patient to patient , those who have received differing other treatments.... it is virtually IMPOSSIBLE to know what is 'working'...if indeed it is in the event of any responses.
You will find more information on treatment topics and various issues in these groups...
https://www.facebook.com/groups/123937634349898/ - DIPG (Diffuse Intrinsic Pontine Glioma) Awareness for Family and Friends
https://www.facebook.com/groups/DIPG.Research/ - DIPG Research - (Research only group)
https://www.facebook.com/groups/DIPGfamilies/ - Diffuse Intrinsic Pontine Glioma: DIPG/Brain tumor/Cancer Families
https://www.facebook.com/groups/969055233105623/ - DIPG Parents Only Sanctuary
https://www.facebook.com/makingDIPGhistory/ - Making DIPG History (A page originally to follow families on treatment in Mexico)