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Together we can cure Rare disease Help save those who need it the most Together we can cure Rare disease Help save those who need it the most Our History Eleanor Leni Kaplan was born a perfect baby in June of 2018. On her fifth day of her life she had to be rushed back to the hospital and admitted to the NICU thus beginning our quest for answers. Four years ago she was diagnosed with one of the the rarest and most severe genetic diseases TECPR2 or Spastic Paraplegia 49 a extremely progressive neurodegenerative disease that is ultimately fatal to children. It is pediatric ALS.