This is a single
speech (house debate) resource
from the openparliament.ca API. If you’re new here, you might want to look at the documentation. If API and JSON are gibberish to you, you’re better off at our main site.
This is a single
speech (house debate) resource
from the openparliament.ca API. If you’re new here, you might want to look at the documentation. If API and JSON are gibberish to you, you’re better off at our main site.
{
"time": "2023-05-02 14:05:00",
"attribution": {
"en": "Mr. Earl Dreeshen (Red Deer\u2014Mountain View, CPC)",
"fr": "M. Earl Dreeshen (Red Deer\u2014Mountain View, PCC)"
},
"content": {
"en": "<p data-HoCid=\"7732042\" data-originallang=\"en\">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.</p>\n<p data-HoCid=\"7732043\" data-originallang=\"en\">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.</p>\n<p data-HoCid=\"7732044\" data-originallang=\"en\">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.</p>",
"fr": "<p data-HoCid=\"7732042\" data-originallang=\"en\">Monsieur le Pr\u00e9sident, le 2 mai, c'est la journ\u00e9e des cheveux boucl\u00e9s. La neuropathie \u00e0 axones g\u00e9ants est une maladie g\u00e9n\u00e9tique infantile rare qui touche le syst\u00e8me nerveux. C'est une maladie mortelle. Il y en a 73 cas dans le monde, dont 2 en Alberta. L'un d'entre eux est celui de mon petit-fils Julian.</p>\n<p data-HoCid=\"7732043\" data-originallang=\"en\">Des projets pilotes sont en cours dans le monde entier, avec des essais th\u00e9rapeutiques uniques pour cette maladie et d'autres maladies g\u00e9n\u00e9tiques. Par contre, ce qui nous fait d\u00e9faut, ce sont les moyens de facilement coordonner un tel projet.</p>\n<p data-HoCid=\"7732044\" data-originallang=\"en\">Un des sympt\u00f4mes de Julian qui a men\u00e9 \u00e0 son diagnostic, ce sont ses cheveux fris\u00e9s serr\u00e9s. Ce marqueur, qui est tr\u00e8s \u00e9vident pour cette maladie, est \u00e0 l'origine du fonds caritatif Hannah's Hope, qui demande \u00e0 ce que le 2 mai soit la journ\u00e9e des cheveux boucl\u00e9s. J'invite les d\u00e9put\u00e9s \u00e0 penser \u00e0 ces enfants tous les 2 mai afin de les soutenir, eux et leur famille, dans l'attente d'un rem\u00e8de \u00e0 cette maladie.</p>"
},
"url": "/debates/2023/5/2/earl-dreeshen-1/",
"politician_url": "/politicians/earl-dreeshen/",
"politician_membership_url": "/politicians/memberships/4290/",
"procedural": false,
"source_id": "12180122",
"h1": {
"en": "Statements by Members",
"fr": "D\u00e9clarations de d\u00e9put\u00e9s"
},
"h2": {
"en": "Giant Axonal Neuropathy",
"fr": "La neuropathie \u00e0 axones g\u00e9ants"
},
"document_url": "/debates/2023/5/2/",
"related": {
"document_speeches_url": "/speeches/?document=%2Fdebates%2F2023%2F5%2F2%2F"
}
}