The organizers of this survey are Bridget Lassig (mother to 17 year-old complicated de Novo SPG4) and Ece Filiz (mother to 3 year-old complicated SPG3). You might have seen us post two different surveys on various Facebook groups over the last 1.5 years. We have joined forces and created this informal (not scientific) survey, which we hope to repeat annually.
We have the following goals:
- create an informal register of childhood onset HSP cases
- explore the prevalence of duplicate variants
- connect families with similar symptoms, diagnoses and variants
- connect families with the leading HSP researchers
- contribute to research
We will share the aggregate results of this survey, without any identifiers or email addresses of the participants, with the following researchers:
- Dr. Daris Ebrahimi-Fakhari (Boston Children's Hospital)
- Dr. Peter Baas (Drexel University)
- Dr. John Fink (Michigan University)
- Dr. Craig Blackstone (Massachusetts General Hospital)
And HSP foundations, such as:
- Cure AP-4
- Cure SPG4
- HSP Research Foundation
- HSP Support Group
Please let us know if there are any other researchers or foundations with whom we should share the results.
We have included a "Communications" section at the end of the survey where you can indicate whether you would like to be contacted by us, other families and researchers. We will not share your data or information without your consent.
If you are an adult but had early onset (prior to age 18), please complete answering each question for yourself (as opposed to the indicated "your child").
Thank you so much for your time!
Bridget & Ece
bridget.lassig@gmail.comefiliz@gmail.com