We are on hand to support families affected by neuroblastoma, with the challenges they face throughout their journey with the disease.
Our frontline Family Support team has personal and professional experience of dealing with neuroblastoma, and the knowledge and expertise to support families in the most effective way.
How do we support families?
This varies depending on their needs, but can include:
- Helping families to identify – and understand – the treatment options that are available post-NHS standard treatment, or when their child is not responding to standard treatment.
- Helping families to identify what questions they need to ask their oncologist to enable them to make informed decisions.
- Liaising between a child’s family, healthcare team and relevant third parties to help achieve the best outcomes.
- Helping families to deal with some of the emotional and practical challenges caused by neuroblastoma.
- Facilitating fundraising campaigns for families to help raise the necessary costs of accessing treatment that is not available through the NHS.
- Helping families to fully prepare for accessing treatment abroad – from cost negotiations with the overseas hospital, to organising flights and accommodation.
- Hosting families at our annual Neuroblastoma Parent Education Conference, where they can learn about the global research landscape from world-leading experts.
Meet our Family Support team
Family Coordinator, Vicky Inglis is the main point of contact for families at SKC. Vicky applies her personal experience and knowledge of neuroblastoma to identify and address families’ needs, aiming for the best outcome each time.
Family Consultant, Donna Ludwinski has a vast knowledge of the neuroblastoma research landscape.
As a staunch parent advocate, Donna is passionate about providing resources to neuroblastoma families, and guiding them through the realms of clinical trials to empower their decision-making.
Donna sits on many prominent paediatric oncology boards including the Food and Drug Administration, New Approaches to Neuroblastoma Therapy (NANT), Coalition Against Childhood Cancer (CAC2), Society for the Immunotherapy of Cancer (SITC) and the National Cancer Institute (NCA).
Get in touch
You can reach out to our Family Support team for help at any point in your journey with neuroblastoma at: firstname.lastname@example.org
Note: Solving Kids’ Cancer encourages families to seek advice and information about clinical trials from their oncologist. The information we provide is objective and impartial; and aims to provide families with additional tools to support their decision-making.