CHILDHOOD
HEREDITARY
SPASTIC PARAPLEGIA (HSP)

CHILDHOOD HEREDITARY SPASTIC PARAPLEGIA (HSP)

HSP is a rare genetic condition.

Childhood Onset HSP Parent Survey

PARTICIPATE

Who set up the survey?

  • Bridget Lassig, whose 18 year-old son has SPG4
  • Ece Filiz, whose 4 year-old daughter has SPG3A

What happens to the data?

  • We connect patients with same variants and types of HSP
  • We aggregate results and share the report with researchers and healthcare professionals

What's the purpose?

  • increasing the number of identified early onset HSP cases
  • supporting researchers
  • connecting the community
  • discovering trends, including shared variants
  • informing diagnosis trends
  • reducing rates of misdiagnosis

2022 Survey Results Report

There is hope for children with HSP.

Several researchers and cure organizations have concentrated their efforts on finding cures for the different types of childhood onset HSP.

Some of them are very close to clinical trials.

HSP Cure and Support Foundations

Cure AP-4 (SPG 47, SPG 50, and SPG 51) - US

Cure SPG4 - US

Cure SPG50 - Canada

Enorev - France

Carter Foundation - Kids with SPG3A

Our Moon's Mission (SPG 56) - Australia

Saving Jordan Foundation (SPG49)

The Lily & Blair Foundation (De Novo SPG4) - US

The Maddi Foundation (SPG15) - UK

The HSP & PLS Foundation - US

HSP Research Foundation - Australia

The Hereditary Spastic Paraplegia Support Group - UK

The Tom Wahlig Foundation - Germany

Registry and Natural History Study for Childhood Onset HSP

PARTICIPATE
  • Dr Darius Ebrahimi-Fakhari from Boston Children’s Hospital is building a registry of all childhood onset Hereditary Spastic Paraplegias (Registry and Natural History Study for Early Onset Hereditary Spastic Paraplegia).
  • Natural history studies are critical for rare diseases. Future clinical trials related to cures for childhood HSP will rely on this registry.
  • The study is still seeking participants globally.
  • Enrollment is FREE. You only need to send your test results and have a 1-hour zoom consultation (interpretation services are available if English is not your first language).
  • Inclusion criteria:
  • Onset of hereditary spastic paraplegia symptoms before the age of 18 years
  • Current age under 30
  • Having variants in HSP related genes and/or a relative with such a diagnosis

How can you help?

Take the Childhood Onset HSP Parent Survey
‍

TAKE THE SURVEY

Enroll in the Registry and Natural History Study for Childhood Onset HSP

ENROLL IN THE STUDY

When it comes to finding a cure for a rare disease, there is strength in numbers!

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