Our 2022 Apero is a wrap, an amazingly successful event in one of the most historic venues in Zurich: "HAUS ZUM RÜDEN | Eine Hommage an Zürich" to support accelerating the research for a DIPG cure and expand access of quality care and clinical trials in Europe. With the specials collaboration with the DIPG/DMG Center Zurich combining the University of California, San Francisco (UCSF) and CHILDREN'S HOSPITAL ZÜRICH (KISPI).
Attendees traveled from Italy, Sweden, the USA, the UK and various parts of Switzerland for the event. Over 50 supporters were there representing pre-lcinical research, hospitals, clinicians, industry partners and start-ups as well as many supporters. We were honored to have two current DIPG Warriors and their families. Everyone involved were
The participants aligned around the team of "Real-live heroes save children lives" and 100% of the proceeds of the event were matched by the SwissDIPG.org founders and will be used to further the KISPI DIPG/DMG center and their research.
Speakers included the parents of Joan and Adam as well as:
Prof. PhD Javad Nazarian (Head of DIPG/DMG Research Center; Scientific Director of the Brain Tumor Institute at Children’s National Hospital …;
MD Ph.D. MAS Sabine Mueller (Lead Pediatric Brain Tumor Program at UCSF, Head of the Clinical Program of the DIPG/DMG … )
Prof. Dr. Grotzer Michael (Medical Director KISPI, prof. Pediatrics USZ ...)
The topics covered included the slow progress over that past 40 years. With identical standard of care treatment being offered and identical prognosis as what Neil Armstrong daughter got in 1962 when she died from this brain tumor (see The Washington Post story from 2018)
What DIPG is?
👉🏻The deadliest childhood cancer
👉🏻5000 - 7000 children diagnosed with DIPG per year
👉🏻 The median survival is 8-11 months
👉🏻Median patient age 6-7 yo.
👉🏻 Radiotherapy: the only standard of care with recommendation “to spend some time and build memories”
👉🏻 Caused by randomness: a game of chance
Then the experts shared the most recent progress and exciting pre-clinical work, clinical trials, how the word "impossible" is the main motivator and how many impossibilities they have already overcame in the past 4-5 years.
Governments and big-pharma continue to largely ignore funding for this disease as it impact the very small, but most vulnerable" children population. So the majority of funding has come with philanthropic organizations like "Swiss To Cure DIPG". This funding is already showing that some of those clinical trials are showing results with handful breakthrough cases being reported and considerably increased life-expectancy and quality of life reported by some of those trials.
To continue supporting the research and the availability of such trials to more children and their families join the cause:
Be a Real-Live Hero:
👉🏻 Pick ONE person or group from your network now; talk to them & share your passion for DIPG children
👉🏻 Share your ideas with us, volunteer, join the team … (cure@swissdipg.org)
👉🏻 Follow us on social media and spread Awareness “Swiss to Cure DIPG”
Some impressions from the wonderful historical venue and the amazing guests:
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