Take a Survey to help research
Two mums of children with HSP, Bridget from the US and Ece from the UK, would like to hear from other parents of children with HSP to gather data that might help researchers and clinicians working on treatments.
They would like you to take a survey to create a register of childhood-onset HSP cases. The survey is not scientific, so everyone can answer the questions. It will take about 5-10 minutes to complete.
Bridget lives in the US. Her son, Donovan, just turned 18 and has complicated, sporadic SPG4. Donovan was diagnosed with cerebral palsy (CP) at age 2. As his symptoms worsened during puberty, his diagnosis was revised to HSP when he was 14.
Ece lives in the UK. Her daughter, Emily, is 3 years old and has complicated, sporadic SPG3A. Emily was diagnosed with HSP shortly after turning one. Her mutation is rare and so far, has been reported in only one adult.
Since getting their children’s HSP diagnosis, both Bridget and Ece have been finding other children with HSP. As with any research into cures for rare diseases, there is strength in numbers and they are trying to bring as many people with HSP together as possible to collect data to help guide research.
They will share the aggregate results of this survey anonymously, without any identifiers or email addresses of the participants, with researchers working on HSP and HSP associations around the world. You will have the option to choose your communication preferences as you take the survey.
Ece and Bridget hope that parents of children with HSP, or individuals who had HSP symptoms before the age of 18 themselves, can complete the survey.
You can find further information on the survey and the survey questions at this link.
Disclaimer: The HSP Research Foundation is publicising this survey as a service to these parents, but is not in a position to provide an endorsement or recommendation.