Medical disclaimer

1. Purpose of the information

The information published on the IvaCaterina’s Waymakers Association website about SPG4, a form of hereditary spastic paraplegia, and about scientific research is for educational and informational purposes only. It is intended for the general public and is not tailored to any individual's medical situation.

2. We do not give medical advice

The content of this website is not medical advice, a diagnosis or a treatment recommendation, and it does not replace a consultation with a doctor. For any question about your health or that of a family member, including genetic testing, please consult a neurologist or a medical geneticist. For children, decisions about diagnosis, treatment and rehabilitation should be made together with a paediatric neurologist, a clinical geneticist and the team caring for the child. Do not delay or stop treatment, and do not disregard medical advice, because of anything you have read on this website.

3. About therapies under research

• Genetic therapies and other approaches presented as being under research are experimental (investigational). They are not approved treatments, and their safety and efficacy have not been demonstrated.
• As at the last update (November 2026), there is no approved treatment that modifies the course of SPG4. Options for managing symptoms should be decided only together with your treating doctor.
• Results obtained in the laboratory or in experimental models do not guarantee similar results in humans. Research can take many years and may not lead to a treatment.

4. What the Association does not do

• it does not provide medical services, make diagnoses or recommend treatments;
• it does not recruit participants for clinical trials and does not broker access to clinical trials or experimental therapies;
• it does not guarantee the results of the research it supports, nor any timeline for them;
• a donation does not give access to treatments, clinical trials or any medical benefit.

If you hear about a clinical trial, discuss it with your doctor and check the information in official clinical-trial registries (for example, ClinicalTrials.gov or the European Union's clinical trials database).

5. Scientific sources

Our scientific content is based on published sources, which we cite together with the date of publication or of our last check. Science moves quickly and information may become outdated. We do not guarantee that the information is complete or current at all times. If you spot an error, please write to contact@ivacaterina.org.

Please do not send us personal medical information through the forms on this website (see the Privacy policy).

6. Emergencies

In a medical emergency, call 112 immediately. The Association's website and email addresses are not monitored for emergencies.

7. Liability

Decisions about health should be made together with a doctor. To the extent permitted by law, the Association is not liable for decisions taken solely on the basis of information published on this website.