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House Hansard - 189

44th Parl. 1st Sess.
May 2, 2023 10:00AM
Context: House Hansard - 189 - May/2/23
Mr. Earl Dreeshen (Red Deer—Mountain View, CPC)
  • May/2/23 2:06:56 p.m.
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Mr. Speaker, May 2 is Curly Hair Day. Giant axonal neuropathy is a rare childhood genetic disorder; it affects the nervous system, and it is terminal. There are 73 cases of GAN in the world. Two such cases are in Alberta. One of these is our grandson, Julian. There are international pilot projects that could offer unique research therapies for this and other genetic conditions, but what we lack is the ability to seamlessly coordinate such projects. One of the symptoms that led to the diagnosis of GAN for Julian was his tightly curled hair. This marker, which is so obvious in this disorder, sparked an initiative called Hannah's Hope Fund, which calls for May 2 to be Curly Hair Day. To support these children and their families in the struggle for a cure, I encourage members to think about them every May 2.
145 words
  • Hear!
  • Rabble!
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