ʻO wau ʻo ALS, ka Hui ALS a me ka Muscular Dystrophy Association (MDA) e hoʻolauleʻa nei i kēia lā i ka hoʻoholo ʻana o ka ACT no ALS (HR3537/S.1813) i ka Hale o nā Lunamakaʻāinana a kāhea aku i ka hana Senate koke e hoʻouna i kēia bila i ka pākaukau o ka Pelekikena. Mahalo mākou i ko mākou poʻe poʻokela ʻo Congressmen Quigley lāua ʻo Fortenberry a me nā alakaʻi a puni ka Hale no ka hoʻokō ʻana i kēia lā.
Me ka ʻoi aku o 330 Hale a me 50 mau hui Senate, ʻoi aku ka nui o kēia bila koʻikoʻi ma mua o nā bila i hoʻokomo ʻia ma ka ʻAhaʻōlelo i kēia makahiki. ʻO ka koho balota o kēia lā e hoʻokokoke i kēia kānāwai i ka hoʻololi ʻana i ke ola o ka poʻe e noho nei me ka ALS a me nā maʻi neurodegenerative ʻē aʻe.
Hoʻokumu ʻo ACT no ALS i kahi papahana hāʻawi kālā hou e loaʻa kālā i ka loaʻa ʻana o nā lāʻau lapaʻau ALS hoʻokolokolo no ka poʻe e noho ana me ALS ʻaʻole hiki ke komo i nā hoʻokolohua lapaʻau, ʻoiai e kākoʻo ana i ka noiʻi e pili ana i ka palekana lapaʻau a me ka holomua ʻana o ALS.
Hāʻawi ke kānāwai i ka noiʻi maʻi neurodegenerative ma o kahi papahana Food and Drug Administration (FDA) Rare Neurodegenerative Disease Grant Program. He mea koʻikoʻi kēia papahana i ka mālama ʻana i ka FDA a me nā keʻena federal e neʻe wikiwiki ana e ʻimi i nā lāʻau lapaʻau a me nā lāʻau lapaʻau i hiki ke ʻae ʻia e ka FDA, uhi ʻia e ka ʻinikua olakino a hiki i nā mea āpau.
ʻO ka hope loa, e hoʻokumu ka ACT no ALS i kahi Health and Human Services (HHS) Public-Private Partnership for Rare Neurodegenerative Diseases i alakaʻi pū ʻia e ka FDA a me nā National Institutes of Health (NIH), ka hui federal mua i hoʻopiʻi ʻia me ke kuleana e wikiwiki. ka hoʻomohala ʻana a me ka ʻae ʻana i nā lāʻau lapaʻau no nā maʻi neurodegenerative kakaʻikahi.