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Raising awareness of DIPGs in Westminster

We are working with Kirsten Oswald, MP for East Renfrewshire & SNP Westminster Deputy Leader

Kirsten has tabled an Early Day Motion (EDM) to raise awareness of diffuse midline glioma, previously, and still commonly known as DIPG.

With our support, Kirsten is highlighting the need for increased awareness and greater research capacity for DIPGs expressing vehement concern that treatment for DIPG has been unchanged for almost 40 years, with only 10% of children with DIPG surviving for more than two years following their diagnosis.

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 look forward to this being debated in parliament soon, allowing MPs to press the UK Government for action.”

It is imperative that we too continue to drive for policy change at government level so that vital funds are invested in research. We are calling for renewed focus on research and awareness of childhood brainstem tumours so other families don’t have to face the heartbreak of this devastating disease.

DIPGs, the second most common type of primary high-grade brain tumour found in British children, are not amenable to surgery and the radiotherapy offered in the UK is for palliative purposes only.

The motion welcomes the work we are currently funding, that relates to understanding or treating diffuse midline glioma, but there is a severe lack of funding for research of DIPG with a fraction of cancer research funding going towards paediatric brain tumours.

This EDM will be published today, 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 aims to accelerate research and has attracted over 100,000 signatures, so will now be considered by the Petitions Committee.

The first six Members who sign to support the EDM will be the sponsors. Other MPs may then show their support for the EDM by adding their own signature to it.
We will continue to work with Kirsten, and all MPs in support of this motion, to raise awareness and ensure our community voice is heard by Government and Parliament.

Together, we can take action and effect change. But we can only do this with your support. Share this motion on social media and write to your MP to ask them to sign the motion.

By attracting the signatures of other MPs we can demonstrate the level of parliamentary support, attract more public interest and media coverage as well, helping all our community call loudly for vital policy changes from government.

We campaign on behalf of everyone affected by a brain tumour, ensuring your voice is heard where it matters most.