who can attend

Cancer (Oncology)

• Constitutional Mismatch Repair Deficiency (CMMRD)
• Ewing Sarcoma
• Leukemia (AML, ALL)
• Lymphoma
• Myelofibrosis
• Nephroblastoma
• Neuroblastoma
• Osteosarcoma
• Rhabdomyosarcoma
• Wilms Tumor
• Other cancers

Preference will be given to children in active treatment (diagnosed child age 5-15)

Constitutional Mismatch Repair Deficiency (CMMRD)

In partnership with the Krishnan Family Foundation (diagnosed child birth–18)

Fibrodysplasia Ossificans Progressiva (FOP)

In partnership with IFOPA (diagnosed child birth – 18)

Progeria

In partnership with the Progeria Research Foundation (diagnosed child birth–18)

Sickle Cell Disease (diagnosed child 5-15)

Metabolic/Mitochondrial Disorders (diagnosed child 5-15)

• Glycogen Storage Disease
• Lysosomal storage (ie., Hurler Syndrome, Gaucher Disease)
• Mitochondrial Disease (ie., MELAS)
• Ornithine Transcarbamylase Deficiency (OTC Deficiency)
• Phenylketonuria (PKU)
• Pyruvate Kinase Deficiency
• Tyrosinemia
• Very-long-chain acyl-CoA Dehydrogenase Deficiency (VLCAD)

Neurofibromatosis (diagnosed child 5–15)

• NF 1
• NF 2
• Schwannomatosis