There is NO CURE for MPS. There are few treatments, this toxic cellular waste collection is just like Dementia and ALS in adults, and sneaks up on our children. If all provinces in Canada had MPS on their newborn screening panels we would be able to catch and treat earlier - treat - not cure. Treating earlier means a better quality of life, but this disease doesn't ever go away. It's in the cellular structure, slowing it's progression is all that can be done currently.
\nOur organisation helps families from diagnosis to end of life and beyond. We are there to help inform, advocate, build community and end isolation. The research community is working hard to find ways to cure, we help by asking for donations in research funding and providing it to researchers. We know who they are and can help distribute and do quality checks along the way.
\nThe families we serve are in SHOCK, they have been hit hard with a trauma of everyday living and can not see the forest for the trees. Our support helps bring them information without having to search and inform when new clinical trials are on the horizon.
\nWe spend less than 5% on our operational costs. We are virtual so we can be anywhere in the country when needed. We travel to regions and host get togethers in person so that families can build local community support. We connect families via virtual meetings so people in remote locations do not feel isolated.
\nHelp us deliver our mission. To ensure that every person affected by MPS lives their best life.
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\nIl n'existe AUCUN REMÈDE contre la MPS. Les traitements sont rares ; cette accumulation de déchets cellulaires toxiques s'apparente à la démence et à la SLA chez les adultes, et s'installe insidieusement chez nos enfants. Si toutes les provinces du Canada incluaient la MPS dans leurs programmes de dépistage néonatal, nous pourrions la détecter et la traiter plus tôt – la traiter, pas la guérir. Un traitement précoce signifie une meilleure qualité de vie, mais cette maladie ne disparaît jamais. Elle est ancrée dans la structure cellulaire ; ralentir sa progression est tout ce que l'on peut faire actuellement.
\nNotre organisation accompagne les familles depuis le diagnostic jusqu'à la fin de vie et au-delà. Nous sommes là pour informer, défendre leurs intérêts, créer une communauté et mettre fin à l'isolement. La communauté scientifique travaille d'arrache-pied pour trouver des moyens de guérir la maladie ; nous apportons notre aide en sollicitant des dons pour financer la recherche et en les transmettant aux chercheurs. Nous savons qui ils sont et pouvons contribuer à la distribution des fonds et à la vérification de leur utilisation tout au long du processus.
\nLes familles que nous accompagnons sont en état de CHOC ; elles ont été durement touchées par le traumatisme de la vie quotidienne et ne voient plus la forêt derrière les arbres. Notre soutien leur permet d’obtenir des informations sans avoir à les rechercher et les informe lorsque de nouveaux essais cliniques se profilent.
\nNous consacrons moins de 5 % de nos ressources à nos frais de fonctionnement. Nous sommes une organisation virtuelle, ce qui nous permet d'intervenir partout dans le pays en cas de besoin. Nous nous rendons dans les régions et organisons des rencontres en personne afin que les familles puissent se constituer un réseau de soutien local. Nous mettons les familles en relation via des réunions virtuelles afin que les personnes vivant dans des zones isolées ne se sentent pas seules.
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