Hereditary Spastic Paraplegia Childhood Onset Survey 2022 Public Report
Why was the Survey done?
It’s been our observation that a great deal of information on childhood HSP is shared through personal experiences on social media. We wanted a means to capture the perspectives of parents, facilitate connections, and communicate trends to researchers to enhance wider recognition.
What are the goals of the Survey?
The goal of the survey is to broaden the number of identified early onset HSP cases with the aim of: ● supporting researchers ● connecting the community ● discovering trends, including shared variants ● informing diagnosis trends for reduction of misdiagnosis
What the Survey is NOT!
It is not a scientific survey; we do not gather personally identifying information and we do not validate responses. The survey is not a complete picture. The survey was shared through social media and foundations focusing on HSP. Respondents are continuing to complete the survey and we will leave it open for this reason. The data has not and will not be sold. This initiative is entirely driven by parents who volunteer their time and effort to share self-reported trends and information for the betterment of our children.
The Washington Post published an article on March 19, 2023 about two little girls both diagnosed with HSP - SPG4, Lily and Blair. Click on the first image below to go the link or the second image to read the article.