For every tomorrow
Patient Stories
FOR EVERY TOMORROW
Every story is a step forward.
Discover the journeys of patients who have experienced Sonodynamic Therapy (SDT), and how innovation, courage and care are shaping new possibilities for tomorrow.
Real Patient Experiences with Sonodynamic Therapy.
Real Patient Experiences with Sonodynamic Therapy
Each journey reflects the potential to change outcomes in brain tumour treatment.
Dunc’s Story – A Journey of Hope with Sonodynamic Therapy
Dunk, based in Scotland, was among the first to take part in an SDT trial in the USA. His story offers a powerful insight into living with GBM, exploring new treatment pathways, and holding onto hope. Watch the video of him describing how the treatment helped him, and his father talk about the difficult journey they embarked upon to learn how innovation and resilience came together in the fight against this devastating disease.
NEWS:
Aunty M Brain Tumours Talk Show – Interview with Richard and Jane
We sat down with Aunty M Brain Tumours Talk Show to share our story. Why we started CureGBM. What happened when our dad was diagnosed with glioblastoma in 2021. How we discovered sonodynamic therapy and realized it wasn’t available in Europe. And why we decided to stop waiting and build the pathway ourselves.
Frequently Asked Questions (FAQs)
About Sonodynamic Therapy (SDT)
Sonodynamic Therapy (SDT) is a non-invasive treatment that uses focused ultrasound to activate a drug called 5-
ALA (5-aminolevulinic acid) inside brain tumour cells. After ingestion, 5-ALA accumulates selectively in cancer cells, and when activated by the ultrasound energy, it causes those cells to self-destruct through a process called
reactive oxygen species release. Healthy brain tissue surrounding the tumour is left untouched.
Surgery, chemotherapy, and radiotherapy are the current standard of care for glioblastoma, and they have not meaningfully changed in thirty years. SDT works by a completely different mechanism. It does not cut, poison, or irradiate. It activates a drug that is already selectively concentrated in tumour cells using sound waves.
The treatment is performed awake, as an outpatient day-case procedure, with no general anaesthetic required and no known therapy-related side effects in studies conducted to date. It does not prevent patients from continuing other
treatments and is repeatable.
5-ALA (5-aminolevulinic acid) is a drug that has been used safely by neurosurgeons for over twenty years as a
fluorescent-guided surgical tool. During surgery, it makes tumour cells glow pink under a special light, helping
surgeons see exactly where the tumour is. In SDT, the same property that makes it accumulate in cancer cells is
used to target the ultrasound energy precisely. Its long safety record in neurosurgery is one of the reasons SDT
can advance into clinical trials with confidence. 5-ALA’s 98% sensitivity for only cancer cells is more precise than
any known chemotherapeutic – it is precision medicine.
The evidence comes from external Phase 1 safety studies conducted in the United States, not from CureGBM’s own trial, which is currently in preparation. Those studies have shown that SDT approximately doubled median survival in patients with recurrent GBM, from 6 to 8 months to around 14 to 15 months.
In children with DIPG, a devastating paediatric brainstem tumour with a typical survival of 9 months after radiotherapy, early results showed median survival increasing to 16 months. In all studies to date, no therapy-related adverse events have been reported, even with repeated monthly treatments.
Important note: These results are from early-phase studies by other research teams looking at the safety of SDT, not its effectiveness. They are the scientific foundation for the Bern trial and are referenced on our website here. Phase 1 trials are designed to test safety and feasibility, not to prove efficacy.
In all clinical studies conducted to date, no therapy-related side effects have been reported. Patients are not
immunosuppressed, do not experience the nausea or fatigue associated with chemotherapy, and do not require recovery time.
The main precaution is avoiding direct sunlight on exposed skin for 24 hours after taking 5-ALA, as the drug can cause photosensitivity. Patients are advised to use SPF 50 sun protection during this period. Theoretical risks such as seizures or intra-tumoural swelling exist, but none have been observed in trials to date.
The patient takes 5-ALA orally before the session. The focused ultrasound is then delivered to the tumour site
using an external device worn on the head, without any cuts, pins, or anaesthesia. The treatment is performed in
an outpatient clinic as a day-case procedure. Sessions are typically repeated monthly. The patient is awake
throughout and can return home the same day.
The therapy exists. The evidence exists. What has not existed, until now, is a regulated European clinical pathway to access it. Early trials with focused ultrasound have taken place in the United States and Italy.
Having our first trial in Switzerland allows us to gain regulatory approvals processes faster than elsewhere in Europe and allows rapid expansion to our planned Phase 2 (efficacy) trial. Running European regulated trials requires navigating bodies such as Swissmedic, EMA & MHRA, obtaining ethics approvals, and building the full clinical infrastructure to enrol, monitor, and support patients. CureGBM was founded specifically to build that pathway. The Bern Phase 1 Safety Trial is the first step.
No, and CureGBM will never claim otherwise. GBM remains a disease without adequate treatment. What SDT has
demonstrated in early studies is a significant improvement in survival and quality of life, with no therapy-related side effects. Whether it can become a chronic, manageable condition for some patients is a question that larger,
controlled trials will need to answer. CureGBM is building the infrastructure to make those trials possible in Europe.
About the CureGBM Bern Trial
CureGBM is preparing a Phase 1 Safety and Feasibility Trial at the University Hospital Bern (Inselspital) in Switzerland, led by Professor Philippe Schucht, Deputy Head of Neurosurgery and Head of Neuro-Oncology. It is
the second regulated non-profit SDT trial in Europe. The trial will investigate whether SDT using a FUS-delivery
device being designed by CureGBM and our biomedical engineers in the USA can be safely used for patients with
recurrent glioblastoma within their existing care pathway.
ALA (5-aminolevulinic acid) inside brain tumour cells. After ingestion, 5-ALA accumulates selectively in cancer cells, and when activated by the ultrasound energy, it causes those cells to self-destruct through a process called reactive oxygen species release. Healthy brain tissue surrounding the tumour is left untouched.
A Phase 1 trial is the first stage of regulated clinical testing in humans. Its primary purpose is to establish safety and feasibility, not to prove that a treatment works. It involves a small number of carefully selected patients, closely monitored throughout. The data gathered from a Phase 1 trial informs the design of larger Phase 2 and Phase 3 trials, which test effectiveness at greater scale. CureGBM is transparent that we are at the beginning of the
European clinical pathway, not the end of it.
The trial is designed for adults with confirmed recurrent Glioblastoma (IDH-1 wildtype recGBM) who have
previously completed the standard Stupp protocol of maximal resective surgery, radiotherapy, and chemotherapy.
Additional criteria include being aged over 18, having a Karnofsky Performance Score of 70 to 100 (meaning the
patient can carry out normal activity with only minor assistance), being able to provide informed consent, and not currently participating in another experimental trial. There are also specific medical exclusion criteria relating to liver function, coagulation, pregnancy, and certain pre-existing conditions. Final eligibility is determined by the clinical trial team in Bern.
The trial will be conducted at the University Hospital Bern (Inselspital) in Switzerland, one of Europe’s leading
academic medical centres. Inselspital is the primary teaching hospital of the University of Bern and has a strong
track record in neurosurgical innovation and clinical trial delivery.
The trial is planned to begin in late 2026, subject to final regulatory and ethics approvals. CureGBM will update its
website and contact registered enquirers when enrolment opens.academic medical centres. Inselspital is the primary teaching hospital of the University of Bern and has a strong
track record in neurosurgical innovation and clinical trial delivery.
Participation in the CureGBM trial is free of charge for patients. CureGBM is funded by investors and supporters
specifically so that no patient or family needs to bear the cost of trial participation. We believe that access to a
clinical trial should never depend on a family’s financial resources.
Patients who meet the eligibility criteria will receive SDT treatments alongside their existing three-monthly MRI
surveillance scans, minimising disruption to their current care pathway. Each SDT session involves taking 5-ALA orally, followed by the application of focused ultrasound using the FUS-delivery device.
A CT scan is taken prior to treatment planning. MRI scans are performed the day after each SDT session and monthly for three further months to assess radiological response to treatment. The trial also includes quality-of-life questionnaires and, for patients undergoing redo surgery as standard care, the opportunity to collect tissue samples to look for histological evidence of cell death.
Our focused ultrasound delivery device uses 128 ultrasound transducers at 400kHz to precisely focus energy to
almost any part of the brain. It has been shown to be safe and effective when used in a neuromodulation trial of
twent people with depression haabinhuman efficacy trial.
Unlike earlier devices used in US trials, the Cordance
Cap is designed to be portable and affordable enough for deployment across a network of hospitals, meaning
patients could one day be treated close to home rather than travelling to a specialist centre.
Initial enquiries can be made through the contact form on the CureGBM website. Please select ‘Trial Enquiry’ from the dropdown. Your information will be held securely and you will be contacted by the enrolment team from Bern when the trial opens for recruitment. CureGBM cannot provide individual medical advice, and all eligibility decisions are made by the clinical trial team.
The trial will be conducted in Bern, Switzerland. International patients are welcome to enquire. CureGBM will support with logistical co-ordination where possible. If you are a patient or clinician based outside Switzerland,
please contact us through the website and we will provide as much guidance as we can on next steps.
If you are not eligible for the Bern trial, CureGBM will do its best to signpost other options, including compassionate
access routes and other clinical trials. Jane Oberholzer, our Patient Advocate, is available to speak with patients and families navigating this process. No one who reaches out to CureGBM will be left without a response.
In 2027, there may be the option to undertake SDT if not meeting the strict trial criteria but this is subject to future ethical approvals and the final decision will be taken by the clinical team in Inselspital.
For Patients and Families
A GBM diagnosis is devastating, and the first days and weeks can feel completely overwhelming. Start with the
clinical team at your local hospital, who will guide you through the standard treatment pathway. When you are
ready, CureGBM can help you understand what SDT is, where trials are happening, and whether you or your loved one might be eligible.
Jane Oberholzer, our Patient Advocate, has personal experience of navigating this journey and is here to talk with you and support your through this journey together. You can reach Jane through the contact form on our website.
We understand how painful that moment is. SDT is specifically being developed for patients with recurrent GBM who have exhausted standard care options. If your family member has completed the Stupp protocol of surgery, radiotherapy, and chemotherapy, they may meet the criteria for the Bern trial. Please reach out to us through the contact form. We will respond personally and help you understand what the options are.
SDT does not prevent patients from continuing other treatments. It does not immunosuppress, and it is not known to interact negatively with chemotherapy or radiotherapy. However, patients currently enrolled in another experimental trial or on certain medications may not be eligible. All of these factors are assessed individually by the clinical team.
If you have specific questions about a treatment combination, please ask your oncologist or contact
us and we will direct your question to the appropriate clinician.
The trial is designed to minimise travel burden. SDT sessions are outpatient day-case procedures, meaning
patients do not need to stay in hospital overnight. They are aligned with existing three-monthly MRI appointments
wherever possible. CureGBM will support with logistical coordination for patients travelling from outside
Switzerland. We are acutely aware of the physical and financial strain that travelling for treatment places on
families, and reducing that burden is central to our mission.
Jane Oberholzer, our Patient Advocate, is the first point of contact for patients and families. She is available to answer questions, provide guidance, and direct medical queries to the relevant clinicians involved in the trial.
CureGBM also signposts a range of patient support organisations including Brainstrust, The Brain Tumour Charity, Brain Tumour Support, OurBrainBank, and Macmillan Cancer Support. You will find links to all of these
organisations on our Support Groups webpage.
Yes, please do. We actively encourage patients and families to share our website with their clinical team. The Healthcare Professionals and Researchers sections of our website are specifically designed for clinicians, containing the full scientific evidence base, published references, and the study flow chart for the Bern trial.
If a clinician has questions or would like to discuss trial referral, they can contact us directly through the website.
There are several ways to support us. You can donate through our JustGiving page, hosted by Funding Neuro
(Registered Charity SC042061). You can share our story with people who might benefit from knowing about SDT. If you are an investor or organisation interested in partnering with us, please get in touch through the Investor or Business Partner options on our contact form.
Every contribution, whether financial, professional, or simply sharing our mission, brings SDT one step closer to the patients who need it.
We would be honoured to hear from you. Patient and family stories are at the heart of everything CureGBM does. If you would like to share your experience, please use the ‘Tell Us Your Story’ section on our Patient Stories page, or
contact us directly through the contact form. Your story will only ever be shared with your full consent.
Tell Us Your Story – Share Your Journey
Every story matters. If you or a loved one has experienced brain tumour treatment or Sonodynamic Therapy, we invite you to share your journey. Your story can inspire others, raise awareness and help bring hope to those facing similar challenges.