Cure is polarizing. For scientists and rare disease parents, it’s seen it as the holy grail. But in disability politics, it’s sometimes seen as an ablest concept. I speak with disability rights activist Eli Clare about finding the middle ground.
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Eli is a Vermont-based poet, speaker and activist who lives with cerebral palsy.
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Hello…So my grandson was born 7/16/19 and after having seizures at a few months old, my daughter and her hubby had some concerns. Long story shorten Dreson was diagnosed with Grin1. Ive been googling and I see your handsome son Bryson has Grin1 also. I have so many questions as a grandmother. We definitely are seeking any information so that Dreson can live a happy life.. His 1st bday is approaching and my daughter is planning a celebration. Im trying to put together a information picture book out for the guests shes inviting and also have a Grin1 family join us. She lives in Charlotte. Do you know of a family that will be willing to come by and bond with out family. Which will become a support team for my daughter, Dreson and family? Thanking you in advance for any help. I hope Bryson is doing well..
Thank you so much for reaching out! I hope your grandson is doing well. I think you have already been in contact with my colleague Denise Rehner about setting up a visitor for Dreson’s party? If you have any more questions, don’t hesitate to email me at keith@curegrin.org