Patient Warrior's Fight to Cure SPG52

Dante is our Patient Warrior who was diagnosed with an ultra rare neuro-degenerative disorder in 2017. Dante has spastic paraplegia type 52 (SPG52) caused by a mutation of the AP4S1 gene. This disease affects Dante’s cognitive and physical abilities. And if he does gain the ability to walk independently, he could lose it as spasticity takes over his body. There currently is no formal treatment or cure for SPG52, so in addition to all the therapies, equipment, medicines and prayers to help Dante, we’re working with the Cure AP-4 organization to raise money for gene therapy that would be able to stop the progression of this disease. Dante is just one of only three known cases of SPG52 in the United States and only one of 14 known cases worldwide. We need your help to raise awareness for SPG52, which currently can only be diagnosed with genetic testing and to help raise funds for the gene therapy research which could help Dante and all the SPG52 warriors. Follow along on our journey at PatientWarrior52.com Learn more about AP-4 disorders and the research being done at CureAP4.org Thank you so much for your help and support as we fight to find a cure!

Donations

  • Brian Forpahl  
    • $25 
    • 2 mos
  • Nicole Everett 
    • $100 
    • 2 mos
  • Rosa Gonzalez 
    • $20 
    • 3 mos
  • SowFit Family 
    • $100 
    • 3 mos
  • Anonymous 
    • $200 
    • 4 mos
See all

Organizer

Carrie Rosati Fick 
Organizer
Lockport, NY
Cure SPG52, Inc. 
Registered nonprofit
Donations are 100% tax deductible.
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