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Kirsten Oswald calls for awareness and action on childhood brainstem tumours

Kirsten Oswald, Member of Parliament for East Renfrewshire, has tabled a motion in the Westminster parliament to raise awareness of diffuse midline glioma, previously, and still commonly known as DIPG.

With support from The Brain Tumour Charity, Kirsten is highlighting the need for increased awareness and greater research capacity for DIPGs.

Kirsten’s motion expresses concern that treatment for DIPG has been unchanged for almost 40 years, with only 10 percent of children with DIPG surviving for more than two years following their diagnosis.

The EDM was tabled on Monday 7 September, at the end of the signing period for an e-petition, launched by Fiona Govan, whose grandson died from a DIPG in 2017.

The petition calls for greater awareness of and research into DIPG and has attracted over 100,000 signatures, so will now be considered by Westminster’s Petitions Committee and may lead to a debate in parliament.

The motion welcomes research currently funded by The Brain Tumour Charity and others that relates to understanding or treating DIPG, but there is a severe lack of funding for DIPG research with a fraction of cancer research funding going towards childhood brainstem tumours.

Kirsten said:

"This is a very important issue that we must keep to the fore for the UK Government and also for the wider public.

”In the midst of all the medical advances of recent years, affected families find it heartbreaking to learn that there has been little progress in treatments for DIPG.

”We must step up the research into treatments and, given the impact of the pandemic on charitable giving, public funding will be particularly important in the period ahead.

”The widespread support for greater funding has been demonstrated by over 100,000 people signing the petition in support of the campaign. I will be pressing to have this debated in parliament soon, allowing MPs to press the UK Government for action.”

Sarah Lindsell, CEO at The Brain Tumour Charity, said:

"We urgently need to see renewed focus on childhood brainstem tumours, to ensure greater awareness and much-needed research progress for so many families affected by this devastating disease.

"DIPGs are the second most common type of primary high-grade brain tumour in children and they are still severely lacking in treatment options, with surgery not usually possible and chemotherapy unfortunately not being effective in treating these tumours in children.

"We look forward to continuing to work with Kirsten, and all MPs in support of this motion, to raise awareness and ensure our community's voice is heard by Government and Parliament." ____________________________________________________________ On 15 July 2020 Kirsten asked at Prime Ministers Questions about the case of her constituent, 17-year-old Daniel Caplan. This is the record of that exchange.

Thank you, Mr Speaker. My constituent Daniel Caplan, who has just turned 17, has been diagnosed with a diffuse midline glioma—a brain stem tumour. That is a terminal diagnosis and an absolutely crushing one. There have been no new treatments for conditions like Daniel’s for 40 years, so no progress in treating childhood brain stem tumours. Will the Prime Minister join me in supporting Daniel’s family in their call for a renewed focus on research and for a light to be shone on awareness of childhood brain stem cancers, so that other families in future do not have to face the heartbreak that Daniel and his family are facing today?

Boris Johnson The Prime Minister, Yes, indeed. I know that everybody will sympathise very much with Daniel Caplan and his family. I will do what I can to ensure that the hon. Lady is able to make representations to the Department of Health about ensuring that childhood brain stem cancers are properly understood and properly tackled by this country. _________________________________________________________________

Following the PQ Kirsten has been in contact with the Department for Health to arrange a meeting with Jo Churchill MP, the Minister for Prevention, Public Health and Primary Care.


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