Jog with your dog!
We have an exciting, fun, campaign with your fury friend. For the months of September and October jog with your dog or plod with your pooch for your chosen charity, Funding Neuro. Sign up and get your free Funding Neuro doggy bandana and share your fun with us on Facebook, Instagram.
To sign up contact – sinead@fundingneuro.com
DIPG Trial with Great Ormond Street Hospital (GOSH) is now open for recruitment!
Funding Neuro are overjoyed to announce that the phase 1 study of GD2 CAR-T-cells for patients with H3K27M+DMG is now open for recruitment.
This is a single centre study taking place at Great Ormond Street Hospital (GOSH). NHS eligible patients (age 2-16) from throughout the UK who meet the study inclusion criteria can take part. To discuss if this clinical study may be an option for your child or family member and to be referred to discuss taking part in this study, please contact your own consultant oncologist at your local treatment centre.
If you would like to discuss with us please call David on- 0141 674 1941 or email dmulligan@fundingneuro.com
Glitz and Glamour Dinner 13th October 2023
Funding Neuro is excited to be hosting our first Fundraising dinner on Friday 13th October at Radisson Blu Hotel, Glasgow.
Enjoy a drink on arrival, a delicious 3 course dinner followed by entertainment from our host Des Clarke, and music from Nicholas McDonald.
There will be many opportunities to help us raise vital funds to support our ongoing neurological appeals.
Book your table at our Glitz and Glamour dinner now.
Contact – sinead@fundingneuro.com
Bristol CED DIPG Trial
Funding Neuro has supported Professor Steven Gill over a number of years in his ground breaking treatments for DIPG using Convection Enhanced Delivery methods. During this time18 children have been treated under compassionate treatment with MHRA (‘Medical and Healthcare products Regulatory Agency’) approval and an academic paper on 13 patients was published in the International Journal of Clinical Oncology in January 2021. The conclusions drawn in the paper were that the CED system used was safe and that the drug treatment slowed down the cancer by c.50%. An amazing result!
Unfortunately Renishaw plc, the owners of the CED device used in this treatment have stated that they are unwilling to provide free use of the CED device rendering a full clinical trial uneconomic at this time.
Funding Neuro remains supportive of Professor Gill’s work in this area and are exploring all options.
Dundee Ultrasound Appeal DIPG and Glioblastoma starting 2022
Funding Neuro is working with Dr Kismet Hossain-Ibrahim to raise £400k to purchase an Insightec Ultrasound device. The combination of this device together with a chemical called ALA, provided by SonALAsense, an American company has been proven in safety trials in the USA to safely produce Sonodynamic therapy to reduce the size of cancer tumours within a patient’s skull. Without the need for surgery! MHRA approval is currently being sought for this ground breaking trial which will be heavily funded by SonALAsense.
Donating to the appeal is quick and simple
Now Recruiting: Great Ormond Street Hospital (‘GOSH’) Car-T Cell DIPG trial
Funding Neuro has funded a DIPG trial at GOSH which is now recruiting.
CAR (“Chimeric Antigen Receptor”)-T cell therapy is a type of immunotherapy whereby the patient’s immune system is engineered to recognise and attack cancer cells. This has been used in blood cancers and may work on non-blood cancers as the CAR-T cells will be attacking the same GD2 element found in cancers in unusually high quantities. GOSH has completed a clinical study of CAR-T cell therapy targeting GD2 in children with relapsed neuroblastoma and now wish to extend to DIPG.
This trial will be a 12 patient trial over 2 years at a cost of c£1.2m and Funding Neuro is looking to fund a substantial part of this alongwith the Lyla Nsouli Foundation and Abby’s Army.
Donating to the appeal is quick and simple
Convection Enhanced Delivery provides major brain cancer treatment breakthrough
A British medical team led by Stephen Gill, Professor of Neurosurgery at the University of Bristol, has made a major breakthrough in the treatment of the deadly Diffuse Intrinsic Pontine Gliomas (DIPG) brain cancer which affects young people.
DIPG is currently untreatable and is found in children and young adults aged under 20. In the UK there are around 40 new cases every year. The average lifespan post diagnosis is just nine months and most children die within 18 months.
This outcome has not improved during the past 60 years, due almost entirely to a lack of research and resources. However, in what is being described as a ‘compassionate programme’ at the Harley Street Children’s Hospital, 13 children aged 3-18 had their lives extended by over six months. Two of the children, one from Canada and the other from the Czech Republic, have survived even longer and are still alive today, nearly two years after treatment.
The biggest obstacle to attacking the tumour has been the blood-brain barrier (BBB), an almost impenetrable tissue structure which prevents germs from entering the Pons, the brain’s inner sanctum where the DIPG tumour is found. Stephen Gill, has spent years developing a drug delivery system that bypasses the BBB for the targeted delivery of drugs. The convection enhanced drug delivery facility consists of four catheters which are inserted into the skull and guided to the tumour to deliver controlled quantities of drug directly to it.
None of the children who took part in the programme showed any ill effects from the treatment. The full details were published in the February edition of the International Journal of Clinical Oncology.
Professor Gill is now raising funds to further develop this convection enhanced delivery system for use in a formal trial which he hopes will take place within 24 months. Funding Neuro, is working alongside The Lyla Nsouli Foundation, who have already pledged £2m, to raise the £2.5m required for the trial.
“We are very pleased with the results from the compassionate programme and hope this will soon lead to a life extending therapy for children with this devastating disease. There are many challenges when treating this type of tumour, so it’s very positive that we have been able to overcome a number of these and can now move forward. The next step is to conduct a formal clinical trial which is kindly supported by Funding Neuro and The Lyla Nsouli Foundation.” Professor Gill
“Professor Gill has dedicated years of intensive research and work to get to this stage and our Foundation is committed to supporting his groundbreaking work.” Nadim M Nsouli, Trustee of The Lyla Nsouli Foundation
GDNF Participant Unifying challenge
Funding Neuro are delighted to be supporting the GDNF Participant Unifying challenge
A group of pioneering medical trial participants are set to embark on a 4,200-mile fundraising challenge to support further research into potentially life changing treatments for Parkinson’s. The money raised will be split between three charities to support work in neurotrophic factors, a series of naturally occurring proteins including GDNF and C-CDNF, which can restore damaged brain cells.
Between 1st and 14th September 2021, 42 teams will each cover 100 miles in their own way – walking, running, swimming, cycling, rowing or any other form of human powered travel. Each team will represent one of the participants in the last trial involving GDNF which was the focus of a 2018 BBC documentary entitled “The Parkinson’s Drug Trial – A Miracle Cure?”.
Many of the teams will be led by trial participants, joined by friends, family and other people who are living with Parkinson’s. Each team will be fundraising through sponsorship and donations, hoping to reach up to £4,200 which will be a further contribution to the overall target of £1 million the GDNF Participant Group committed to raise when they formed.
To find out more about the challenge and the GDNF’ers go to www.gdnf.org. To create a team or join the Funding Neuro team please contact Mhairi@fundingneuro.com