{"id":21149,"date":"2025-05-22T22:29:16","date_gmt":"2025-05-22T22:29:16","guid":{"rendered":"https:\/\/lpfch.org\/?p=21149"},"modified":"2025-05-22T22:31:50","modified_gmt":"2025-05-22T22:31:50","slug":"two-families-with-one-goal-find-bpan-treatments","status":"publish","type":"post","link":"https:\/\/lpfch.org\/tl\/impact-stories\/two-families-with-one-goal-find-bpan-treatments\/","title":{"rendered":"Dalawang Pamilyang May Isang Layunin: Maghanap ng Mga Paggamot sa BPAN"},"content":{"rendered":"<p><span data-contrast=\"auto\">Ang apat na taong gulang na si Zoe ay mahilig sa mga puzzle, pagbibisikleta, at pelikulang Disney <\/span><i><span data-contrast=\"auto\">Nagyelo<\/span><\/i><span data-contrast=\"auto\">, habang ang 11-anyos na si Isabel ay gustung-gusto ang pagsakay sa kabayo, si Minnie Mouse, at ang kanyang dalawang nakababatang kapatid. Kahit na mula sa magkaibang pamilya, sina Zoe at Isabel ay nagbabahagi ng higit pa sa kanilang masigla at determinadong personalidad\u2014<\/span><span data-contrast=\"auto\">pareho silang nagna-navigate sa buhay gamit ang betapropeller protein-associated neurodegeneration (BPAN), isang bihira at progresibong sakit na neurodegenerative.<\/span><span data-ccp-props=\"{&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Sa paglipas ng panahon, ang mga batang may BPAN ay unti-unting nawawala ang mga kasanayang pinaghirapan nilang makuha, nagkakaroon ng dystonia, parkinsonism, at dementia. Ang parehong mga pamilya ay determinado na makahanap ng mga sagot at isang landas pasulong pagkatapos masuri ang kanilang mga anak na babae.<\/span><span data-ccp-props=\"{&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">\u201cNalaman namin na dahil bihira ang BPAN, ito ay itinuturing na isang &#039;orphan disease,&#039; \u201d sabi ng mga magulang ni Isabel na sina Kathryn at Robert. &quot;Iilang mga doktor ang nakakaalam tungkol dito, at halos walang pananaliksik na ginagawa upang bumuo ng mga paggamot.&quot;<\/span><span data-ccp-props=\"{&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Bilang tugon, inilunsad ng mag-asawa ang Isabel&#039;s Chance, isang nonprofit na nakatuon sa pangangalap ng pondo para sa pananaliksik sa BPAN.<\/span><span data-ccp-props=\"{&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Desidido ring kumilos ang mga magulang ni Zoe na sina Sherri at Peter. Bumaling sila kay Juliet Knowles, MD, PhD, isang physician scientist sa Stanford na nag-aalaga kay Zoe. &quot;Hindi namin tatanggapin na walang paggamot,&quot; sabi nila. &quot;Sa kabutihang palad, ibinahagi ni Dr. Knowles ang aming pagkaapurahan at pagkahilig sa paghahanap ng mga solusyon.&quot;<\/span><span data-ccp-props=\"{&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Sina Sherri at Peter ay sinamahan ng Isabel&#039;s Chance sa paggawa ng isang makabuluhang regalo upang simulan ang gawain ni Knowles sa paglaban sa BPAN. Nag-assemble si Knowles ng isang world-class na pangkat ng pananaliksik upang pag-aralan ang BPAN sa mga cell na nagmula sa tao at mga modelo ng hayop, na pinagsama-sama ang isang unang-of-its-kind na plano upang matukoy <\/span><span data-contrast=\"auto\">mga potensyal na paggamot na maaaring mabilis na lumipat sa mga klinikal na pagsubok.<\/span><span data-ccp-props=\"{&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>\n<p><span data-contrast=\"auto\">Higit pa sa pagsuporta sa pangunguna ng pananaliksik sa BPAN ng Knowles, ang mga pamilya nina Zoe at Isabel ay naging walang sawang tagapagtaguyod, na nagbabahagi ng kanilang mga kuwento at ang kritikal na gawaing ito sa kanilang mga network. Salamat, Sherri, Peter, Kathryn, at Robert! Ang iyong dedikasyon ay nagpapabilis ng pag-unlad patungo sa mga potensyal na paggamot sa BPAN at nag-aalok ng pag-asa sa mga pamilyang tulad mo.<\/span><span data-ccp-props=\"{&quot;134233118&quot;:false,&quot;201341983&quot;:0,&quot;335559739&quot;:0,&quot;335559740&quot;:240}\">\u00a0<\/span><\/p>","protected":false},"excerpt":{"rendered":"<p>Ang apat na taong gulang na si Zoe ay mahilig sa mga puzzle, bike rides, at sa Disney movie na Frozen, habang ang 11-anyos na si Isabel ay gustung-gusto ang pagsakay sa kabayo, si Minnie Mouse, at ang kanyang dalawang nakababatang kapatid. Kahit\u2026<\/p>","protected":false},"author":7,"featured_media":21155,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"categories":[200],"class_list":["post-21149","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-thank-you-notes","health_topic-neurology"],"acf":[],"yoast_head":"<!-- This site is optimized with the Yoast SEO Premium plugin v27.3 (Yoast SEO v27.3) - https:\/\/yoast.com\/product\/yoast-seo-premium-wordpress\/ -->\n<title>Two Families With One Goal: Find BPAN Treatments - Lucile Packard Foundation for Children&#039;s Health<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/lpfch.org\/tl\/impact-stories\/two-families-with-one-goal-find-bpan-treatments\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Two Families With One Goal: Find BPAN Treatments\" \/>\n<meta property=\"og:description\" content=\"Four-year-old Zoe loves puzzles, bike rides, and the Disney movie Frozen, while 11-year-old Isabel adores horseback riding, Minnie Mouse, and her two younger siblings. 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