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https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/0f9fb4de-f14a-4c43-a2f2-76574b8a978d/MJ+2.png CACNA1A Champion Stories - MJ https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1631721202609-V1UQEMENXGM14S59AHQP/IMG_3941+%283%29.jpeg CACNA1A Champion Stories - Gabrielle https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/14aa9063-0fab-41c8-a29e-ffdf0b57b278/2_b0D2g_EdopXJIH5x2znQVw.jpg CACNA1A Champion Stories - Marika https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/25dfc151-5b31-461e-b0d9-420c580c21a7/elises_story_cacna1a.jpg CACNA1A Champion Stories - Elise https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/a45af49d-02bd-459b-877b-6b180b6a3b31/AverySmile.jpeg CACNA1A Champion Stories - Avery https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/269084e9-6809-4eec-8b3b-ba6d576a4e91/IMG_3755+%281%29.jpeg CACNA1A Champion Stories - Eleanor Rose https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/8734a8b6-c8fb-4373-8f64-0b0b14ac572c/image1+%282%29.jpeg CACNA1A Champion Stories Collin https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/66978f33-a8fa-42ad-bbd5-f6506dfc03fc/123532166+%281%29.jpeg CACNA1A Champion Stories Olive https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/3b711605-5838-4208-af5d-5ba09f103051/Alfie+latest.jpeg CACNA1A Champion Stories Alfie https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/adec5ccd-2ba0-4cf0-acb6-52d86a685ec3/IMG_7010+%281%29.jpeg CACNA1A Champion Stories Mariam https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/bc8fe4a3-98c1-4787-853f-dfe065cb9f0b/PXL_20240930_061932421.MP+%281%29.jpg CACNA1A Champion Stories Harry and James https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/a0fb9d3a-fc6a-4f30-9d5a-3aa5238679fc/Badgett+4.jpeg CACNA1A Champion Stories Oakley https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1aa5fc06-888e-4e97-b28b-832a189dff41/colson+and+platypus.jpeg CACNA1A Champion Stories Colson https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1594245199593-L4M9VG0RUNVXPV8CGLIG/emily_cacna1a_cav2.jpg CACNA1A Champion Stories - Emily https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1594235390534-OTK7ZQGVYKZDLVZINH1J/Addilynn_story_cacna1a.jpg CACNA1A Champion Stories - Addilynn https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1597921840038-N2PLXAACNL2DGPGYR50X/image5.jpg CACNA1A Champion Stories - Emma Emma https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1600082669998-KRHVDSMOY06GJHRTJZ7S/nicholas.jpg CACNA1A Champion Stories - Nicholas https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1602865734858-C6MF3Q0ZAIRMWO9DIIZC/s%2Bwebsite%2Bpic.jpg CACNA1A Champion Stories - S https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1604598376810-85GAI5YP4OK1UW9XTXYZ/polina.jpg CACNA1A Champion Stories - Polina https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/9c4ba8f1-5855-4458-9291-ee9cfb5e70b7/image2+%281%29.jpeg CACNA1A Champion Stories - Darcy https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/83043282-0709-4d11-a7ae-71709ce4f2e3/012BB0D1-1BE1-4DBC-AF18-0803D8A4275E+%281%29.jpg CACNA1A Champion Stories - Louise https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/dafabd5d-400e-4075-a999-29f60c696b4b/BreannaIrwin1.jpeg CACNA1A Champion Stories - Breanna https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/dcc116e9-134f-46b6-b34a-f2f3e5054975/Screen+Shot+2022-10-29+at+5.41.53+PM+%281%29.jpeg CACNA1A Champion Stories - Kyrie Kyrie https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/7dc6c183-8a08-41e8-b464-ba2e6c817e22/IMG_1567.jpeg CACNA1A Champion Stories - Leo https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/fef9212a-d0da-4e5d-b920-677973b61087/IMG_1370.jpeg CACNA1A Champion Stories - Matteo Eliezer https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/973f1968-0b2b-4687-a755-8cb5650d9ac2/20230505_121730.jpeg CACNA1A Champion Stories Noortje https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/95a387bf-6664-4dd9-a9fa-18070dabaf96/20240111_155120+%281%29.jpeg CACNA1A Champion Stories Evelyn https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/79759555-b8b4-400b-a921-bfcd0b881eba/ani8+%281%29.jpeg CACNA1A Champion Stories - Ani https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/717c40a1-36ce-4f12-9c82-4345001248a5/IMG_20240903_160829+%281%29.jpeg CACNA1A Champion Stories Santino https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/a62090ca-860a-47b7-84a6-c01e89ea7ef9/ronan3.jpg CACNA1A Champion Stories Ronan 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https://www.cacna1a.org/research-grant-program daily 0.75 2024-09-09 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1602555104936-QLHBQPTKWJFWESQJJZFI/For+RFP+annoucement+-+Made+with+PosterMyWall%281%29.jpg Research Grant Program https://www.cacna1a.org/grants-awarded daily 0.75 2020-04-18 https://www.cacna1a.org/home daily 0.75 2020-12-18 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1607805531906-EDR5WMOI6GYBZ5G53EBH/curecacna1a.jpg Home https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1596323931162-RW19RLRDPVIUTVDFZE50/brain_cacna1a.png Home https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1596324105110-PEQQ1DITEQ76KIHZB6BE/light_bulb_cacna1a.png Home https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1593447642726-WKOGLTVXP9WMW2RJRIG4/istock.jpg Home - What is it? CACNA1A is a very large gene on the 19th chromosome. Variations in this gene can cause neurodegenerative disease and a variety of neurological symptoms including… Ataxia Migraines & Hemiplegic Migraines Epilepsy Developmental Delays Hypotonia Eye Movement Disorders Cerebellar Atrophy Intellectual Disability https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1593447730484-0CJ8L7NJDGPGU0PDPHU7/iStock-692381806.jpg Home - Meet Affected Patients CACNA1A related symptoms can have devastating effects on patients and their families. Many symptoms begin in childhood and worsen over time. 

 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1593447826493-T6LXXPT1TB6XXLMERC03/reading+in+hospital_cav2_cacna1a.jpg Home - Hope in Research We have the opportunity to change the outcomes of these brave warriors by funding cutting edge research that provides better treatment options. Research is expensive and we are dedicated to finding a cure. https://www.cacna1a.org/contact daily 0.75 2021-09-17 https://www.cacna1a.org/professional-registration daily 0.75 2020-05-30 https://www.cacna1a.org/irelands-story daily 0.75 2022-09-28 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1590806401853-V44D50QYS1R60RTWHMZR/irelands_story_cacna1a.jpg Ireland's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1590775478804-S4CYOWRYDLZDMKYHCRTF/eeg_cacna1a.JPG Ireland's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1590776116914-48W3AY2CK6N6ZZN087FE/Ireland_cacna1a_siblings.jpg Ireland's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1590775749497-AH62TXJQYUQDHUTRPAWO/intubated_ireland_cacna1a.JPG Ireland's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1590776563125-09U7X331EKAHI5IH83UT/cacna1a_mom_daughter.jpg Ireland's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1590775275922-JSV43Q2T468BZO503JIM/tolbert-family-session--29.jpg Ireland's Story https://www.cacna1a.org/submit-your-story daily 0.75 2023-07-18 https://www.cacna1a.org/natural-history-study daily 0.75 2024-11-04 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1629476346464-PJ5BPUJTPMJAXZL8B4UE/naturalhistorystudy.jpg https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1596769565539-RFORKOYQUDW6VFDYGQR5/wendy_chung_md_cacna1a.jpg https://www.cacna1a.org/marens-story daily 0.75 2026-02-14 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1594558731356-L04XV6JPDHWDOMSNBSDC/Maren_sweater.jpg Maren's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1594559116981-DNJ3X3MU8MYK31FAUERH/Maren_wheelchair+on+pier.jpg Maren's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1593391639974-PTDXXXURJZDII6W1JF1Q/Aquatic+Physical+Therapy_cacna1a.jpeg Maren's Story https://www.cacna1a.org/participate-research daily 0.75 2025-10-20 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/bfc1a52d-7489-419e-a934-1802b024e1a0/Graphic+for+Participate+in+Research+%281%29.png https://www.cacna1a.org/register-your-event daily 0.75 2020-08-05 https://www.cacna1a.org/what-is-cacna1a daily 0.75 2023-12-02 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1603134127163-TY26WEDV1HI2XWUWIOUT/Copy%2Bof%2BCopy%2Bof%2BBIRTHDAY%2BPARTY%2BFLYER%2BPOSTER%2BTEMPLATE%2B-%2BMade%2Bwith%2BPosterMyWall.jpg What is CACNA1A? https://www.cacna1a.org/prices-story daily 0.75 2022-09-28 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1593740530498-LKRFNBEKX4M78LG1GNVW/prices_story_cacna1a.jpg Price's Story https://www.cacna1a.org/add daily 0.75 2022-09-28 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1594235549465-5XNK8P4CVO7ZM0CUN9PE/Addilynn_story_cacna1a_cav2.jpg Addilynn's Story https://www.cacna1a.org/sydneys-story daily 0.75 2022-09-28 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1594242686203-UOOBM3EJUXSIDL8A5AFF/Sydney_story_cacna1a_cav2.jpg Sydney's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1594242934116-SRV9OP01HJ4UI7AD9X48/Sydney_cacna1a.jpg Sydney's Story https://www.cacna1a.org/bs-story daily 0.75 2022-09-28 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1594243661075-Z7DQOFV278GKPCYDSY9S/B_Story_CACNA1A_cav2.jpg B's Story https://www.cacna1a.org/emilys-story daily 0.75 2025-12-05 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1594293512257-QDG31NTBTXAJLMES9MDC/Em+and+Daisy+.jpg Emily's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1594678406918-1E4RN7S0UO46MDOMXU95/Emily%2Bat%2Bgraduation%2B.jpg Emily's Story Emily at graduation https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1594678317975-GF2KJU4W7FIJLR7XGHGD/emily_rare_disease_day.jpg Emily's Story Rare Disease Day https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1594757588568-LEH64LZCFZ3I2MN3K4NB/IMG_1235+%282%29.jpeg Emily's Story Emily when she was young https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1594678465746-UEUS9JWQA0IO4ALEVL76/emily_cacna1a_young.jpeg Emily's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1594678567367-ZGHGX5FW2MVB9JEWBNET/family_cacna1a.jpeg Emily's Story Our family today (minus our two grandsons) https://www.cacna1a.org/gabes-story daily 0.75 2022-09-28 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1594677564543-KAT5INBX4YBYM4IPMU06/Gabes_Story_cacna1a.jpeg Gabe's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1594677748786-SX3UX2QXG3PN8D9NMPBB/Gabes_Story_cacna1a_cav2.jpg Gabe's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1594677799597-DSVXINA7BUWFZVKGV8ZV/Gabes_story_cacna1a_cav2_family.jpg Gabe's Story https://www.cacna1a.org/research-goals daily 0.75 2024-08-15 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/f1e21416-ccd7-456e-ae0d-b97f149a7976/collaborationcacna1aresearchers.jpg Research Goals - Collaboration For a Cure We are interested in translational research that paves the way to clinical trials. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/e9b2c7e3-ccc7-4b5f-a7ef-57a6dd4b049d/Chart+of+Data+Collection+Partners+%282%29.png Research Goals - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/27543c4f-5312-43b4-99fa-63c9350ca2de/CACNA1A+Roadmap+to+a+cure.jpg Research Goals https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1593393897130-9BDSNHK83C2FUTF47A33/research+grant+program+cav2.1+disorder+banner.jpg Research Goals - Research Grant Program We are seeking collaborators who are focused on research that makes a difference in the lives of patients. Please contact us if you have an idea that would help move CACNA1A research closer toward targeted treatment options. Our clinical research team offers de-identified patient data to qualified scientists. https://www.cacna1a.org/informational-handouts daily 0.75 2025-03-19 https://www.cacna1a.org/safety daily 0.75 2022-05-23 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1595554506911-EML9VUMXNGBX2QFRELQV/iStock-506104128.jpg Safety - Stay Safe Individuals with CACNA1A variants suffer from different sets of symptoms. It is important to speak with your doctor about your individual risks and how to best keep yourself or your loved one safe. https://www.cacna1a.org/school daily 0.75 2024-10-29 https://www.cacna1a.org/cacna1a-related-disorders daily 0.75 2023-12-02 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1595884114117-6MQX9KEI71N50HMOZTAM/iStock-700614826.jpg CACNA1A-Related Disorders - How Changes on the CACNA1A Gene Can Affect People CACNA1A variants are associated with multiple neurological disorders. 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MJ's Story https://www.cacna1a.org/carlotas-story daily 0.75 2021-01-14 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1610593903913-QURYOVW9V5QS1VVQIDUK/IMG_9329%25282%2529.jpg Carlota's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1610593879653-E455KRVHE6E9QROFYTKR/IMG-20160709-WA0015%25282%2529.jpg Carlota's Story https://www.cacna1a.org/webinar-series-old daily 0.75 2022-03-24 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/738afcae-adcf-4021-9d76-a48fafe41d3c/DEE+Therapies+Webinar+Series+%28Fbook+Post%29+%281%29.png Webinar Series - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/e84a70b7-8ae0-4dec-b05f-c041f7a4582c/Screen+Shot+hypotonia.png Webinar Series - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.cacna1a.org/family-scientific-conference-old daily 0.75 2021-08-25 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1614298233887-6TTXE7N764IY02XW6UTE/Conference+Twitter%281%29.png Family & Scientific Conference https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1629840631300-OH0KCD4OVM12O54A2NIL/Thank-you.png Family & Scientific Conference - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1629840714113-2GE1CLVYYQWE38XTA0XP/greenwich.png Family & Scientific Conference - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1629840765113-TKSENCE5HPN67LRTB7W0/napa.jpg Family & Scientific Conference - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1629840881279-LTD1WJRWAHU1PFEP1C87/belief.jpg Family & Scientific Conference - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1629843212793-AIQVIQ6S5O8G1SK8V08B/ovid.png Family & Scientific Conference - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1629843238671-UF7QJB8APSG7OAL6AR7K/prostate.png Family & Scientific Conference - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1629843300481-3RNVFDV88ECWFX0V2VE6/urology.png Family & Scientific Conference - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.cacna1a.org/daniels-story daily 0.75 2021-03-16 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1615694778302-4W7LKZP1UNXFR5BC6QUJ/thumbnail_IMG_3091.jpg Daniel's Story Daniel playing the frame drum https://www.cacna1a.org/story-template-page daily 0.75 2021-03-16 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1590806401853-V44D50QYS1R60RTWHMZR/irelands_story_cacna1a.jpg Story Template Page https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1590775478804-S4CYOWRYDLZDMKYHCRTF/eeg_cacna1a.JPG Story Template Page https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1590776116914-48W3AY2CK6N6ZZN087FE/Ireland_cacna1a_siblings.jpg Story Template Page https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1590775749497-AH62TXJQYUQDHUTRPAWO/intubated_ireland_cacna1a.JPG Story Template Page 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Gabrielle's Story - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1632840154683-687JEQOZ4BTEV6M28DHZ/Kids+Boat+2019.jpeg Gabrielle's Story - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1631718612452-FBCB6WL814G3SOHV1NPV/IMG_1855+%281%29.jpg Gabrielle's Story https://www.cacna1a.org/grantfundingrecipients daily 0.75 2025-12-08 https://www.cacna1a.org/grantfundingrecipients-miao daily 0.75 2021-04-27 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1619489342960-NVRMPCYE8E6N7NQIY8EK/Qinglong-Miao.jpeg Research Grant Funding Recipients Miao https://www.cacna1a.org/ciitizen daily 0.75 2024-07-09 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RARE-X to build a Data Collection Program for the CACNA1A community. By increasing access to research-ready data, we hope to accelerate the discovery of ground-breaking treatments for CACNA1A! We chose to partner with RARE-X because we hope that by leveraging RARE-X’s data collection platform in conjunction with other rare disease communities, we can increase the likelihood that CACNA1A will be included in cross-disease research. The CACNA1A Data Collection Program will … Inform researchers how CACNA1A-related disorders change over time Enable better data to design and use in clinical trials Provide patients the opportunity to participate in clinical trials Reduce the time it takes to study new medicines Speed up the time to get treatments to patients Enable the use of data as a placebo (instead of actual patients) in a clinical trial There is no cost to participate. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1634247424464-4BUZH5ZTELSGCKPZRZYW/Why-participate-video+thumbnail+%281%29.png CACNA1A + RARE-X Data Collection Program https://www.cacna1a.org/variant-classifications-on-genetic-lab-report daily 0.75 2024-09-15 https://www.cacna1a.org/family-scientific-conference daily 0.75 2021-10-05 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1614298233887-6TTXE7N764IY02XW6UTE/Conference+Twitter%281%29.png Family & Scientific Conference 2021 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1629840631300-OH0KCD4OVM12O54A2NIL/Thank-you.png Family & Scientific Conference 2021 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1629840714113-2GE1CLVYYQWE38XTA0XP/greenwich.png Family & Scientific Conference 2021 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1629840765113-TKSENCE5HPN67LRTB7W0/napa.jpg Family & Scientific Conference 2021 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1629840881279-LTD1WJRWAHU1PFEP1C87/belief.jpg Family & Scientific Conference 2021 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1629843212793-AIQVIQ6S5O8G1SK8V08B/ovid.png Family & Scientific Conference 2021 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1629843238671-UF7QJB8APSG7OAL6AR7K/prostate.png Family & Scientific Conference 2021 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1629843300481-3RNVFDV88ECWFX0V2VE6/urology.png Family & Scientific Conference 2021 - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.cacna1a.org/researchassets daily 0.75 2025-12-11 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/cc18db68-4798-444f-a084-1bbc6596ad52/Copy+of+FOR+AES.png https://www.cacna1a.org/a-brighter-future daily 0.75 2021-11-19 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/f9231ac0-d383-4960-a46d-f864e7652ba3/FB-Give+CACNA1A+a+brighter+future.png Give CACNA1A a brighter future - 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Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/4a5f8707-f420-4064-8535-46b09a1c593d/Twitter-The+Gift+of+Hope.png I Gave the Gift of Hope - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.cacna1a.org/more-than-a-donation daily 0.75 2021-11-10 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/3917b6fb-223b-4dce-b2d6-4bfdbca2e2ce/FB-More+than+a+donation.png More Than a Donation - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/fa85dba5-5384-4ac0-b2a0-5157b748e45e/Insta-More+than+a+donation+%283%29.png More Than a Donation - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/55bdff83-869c-4120-885c-4dc2b409844e/Twitter-More+than+a+donation.png More Than a Donation - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.cacna1a.org/believe-with-us daily 0.75 2021-11-18 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/aa0fd7e6-47cc-4496-9a5a-181673c219d0/FB-Believe+with+us+%281%29.png Believe With Us - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/0f4d2dd8-09d0-409a-9cda-32ac5a2341ee/Insta-Believe+with+us+%281%29.png Believe With Us - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/609e8112-059c-4ddb-948f-9e0c5d9f5018/Twitter-Believe+with+us.png Believe With Us - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.cacna1a.org/darcys-story daily 0.75 2022-10-26 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/7b784561-27fa-4762-b792-9d6b6c72572c/image2+%281%29.jpeg Darcy's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/6eca0d81-f7dd-40c7-9603-32b82f0c57d7/image3.jpeg Darcy's Story https://www.cacna1a.org/louises-story daily 0.75 2022-10-26 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/5a6a4025-c3a3-4fd6-bbc9-cf9e93e8210e/012BB0D1-1BE1-4DBC-AF18-0803D8A4275E+%281%29.jpg Louise's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/0ef63204-6cd3-4bd8-b177-a423d305e7fc/Spong+Family+-+Thanksgiving+2021-36.jpg Louise's Story - 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https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/2dfa3240-68af-4abb-a346-3ada603a91ef/IMG_1567.jpeg Leo's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/dc242518-7079-402d-9934-d022c209c872/IMG_1566.jpeg Leo's Story https://www.cacna1a.org/eleanors-story daily 0.75 2023-03-14 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/6b04af9d-172c-4d68-a78e-8ec23c591d73/IMG_3755+%282%29.jpeg Eleanor's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/32bc67ba-ec55-4368-857c-b922539188b1/IMG_0632+%282%29.jpeg Eleanor's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/4af50397-38ae-42ee-a7ce-73e47171048a/IMG_9845+%281%29.jpeg Eleanor's Story - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.cacna1a.org/grantfundingrecipients-lal daily 0.75 2025-12-08 https://www.cacna1a.org/research-grant-funding-recipients-young daily 0.75 2023-03-17 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/91504261-6bad-4365-9dc8-eac59a93662b/2023_03_13-Samuel+M+Young%2C+Jr.-klaird-005.jpg https://www.cacna1a.org/matteoeliezer-story daily 0.75 2023-04-28 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/3fe08d2c-c108-49ed-b202-17aa04b638b7/IMG_1370.jpeg Matteo Eliezer's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1682268350484-9REX1KD3XCEHGSZ55AEU/IMG_9654+%281%29.jpeg Matteo Eliezer's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1682268352045-DQQ6GTBJ25PWAMMZR079/IMG_1270.jpeg Matteo Eliezer's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1682268353067-0EBH5MLWWBZAXRWUTT2K/IMG_0705.jpeg Matteo Eliezer's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1682268354583-NQ6SGEJ4UDO9W9KDCB2I/IMG_7205.jpeg Matteo Eliezer's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1682268357342-4GKDGRTHP4CNN9D8ZGY3/IMG_9183.jpeg Matteo Eliezer's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1682268357448-I210BMGSS8FMQNLMGOVZ/IMG_5817.jpeg Matteo Eliezer's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1682268359438-XW410NUEFCE0CTLS9GAV/IMG_9014.jpeg Matteo Eliezer's Story https://www.cacna1a.org/probably-genetic daily 0.75 2023-07-10 https://www.cacna1a.org/research-grant-funding-recipients-colecraft daily 0.75 2024-08-07 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/b1cc74ed-9aae-48ab-98c7-1c363469efed/850381d0-e3a5-11ea-b94c-313f6b4d624c.jpg https://www.cacna1a.org/new-page-3 daily 0.75 2023-07-18 https://www.cacna1a.org/new-page-5 daily 0.75 2023-07-26 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/d66c8e16-f230-4d11-9a19-31e825bc66ad/Empowered+Patient+Podcast.jpeg New Page - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.cacna1a.org/scientific-and-medical-journal-articles daily 0.75 2025-06-22 https://www.cacna1a.org/collins-story daily 0.75 2023-09-18 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/48e84049-9cc0-4ae9-9152-d2c593e77d0b/image1+%282%29.jpeg https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1abe938f-f39a-443d-8196-4130682e29b8/image1+%281%29.jpeg https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/a1c3c9c0-655f-4817-a701-abc7ac25bd5d/image3+%282%29.jpeg https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/091b04fe-c478-452c-bd37-d02d75384d02/image0+%286%29.jpeg 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https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/dd790c7c-dd47-43b5-8f68-9736bbc4182a/Olive1jpeg.jpeg Olive's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/d3a95253-0272-4446-81fa-4922ac7298e8/Olivefamily-36.jpg Olive's Story - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/fb0153b6-d530-4ba5-9a8c-4731088d4828/Olivefamily2-48.jpg Olive's Story - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://www.cacna1a.org/evelyns-story daily 0.75 2024-01-17 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/fa29935a-fc64-4af9-a9e5-c5e3754156c1/20240116_071552.jpeg Evelyn's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/bfceeb46-f6fd-4564-95ef-ad41813f9d88/20240111_155120.jpeg Evelyn's Story - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/ddd8dc8f-18cb-4e7d-b0ec-37b56aab1772/20231228_171322.jpeg Evelyn's Story - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1705460056646-3HUVM06KLPHZUTHJX2N5/20231226_164047.jpeg Evelyn's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1705460058499-KOYO6JR77DYPGJ6J3KU1/20240111_171232.jpeg Evelyn's Story https://www.cacna1a.org/research-grant-funding-recipients-young-mdbr daily 0.75 2025-01-08 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/91504261-6bad-4365-9dc8-eac59a93662b/2023_03_13-Samuel+M+Young%2C+Jr.-klaird-005.jpg https://www.cacna1a.org/carters-story daily 0.75 2024-02-27 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Brooke's Story https://www.cacna1a.org/harryandjames-story daily 0.75 2024-12-15 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/0e4b877d-b7df-4471-94ab-c78b8e086e2c/PXL_20240930_061932421.MP+%281%29.jpg Harry and James' Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1734294274624-6WS67B3QS85HDUJ9UJRA/FB_IMG_1732618350949+%281%29.jpg Harry and James' Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1734294259614-Q7BPDY2HVED3L101B4HB/PXL_20241013_145801831.MP+%281%29+%281%29.jpg Harry and James' Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1734294261666-CCGKCQHH2ZTI6FY3BH87/PXL_20241018_071433439.MP+%281%29+%282%29.jpg Harry and James' Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1734294273446-2J2DBMYVZKI225HN577P/PXL_20241014_173023370.MP+%281%29+%281%29.jpg Harry and James' Story 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https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1745935264399-6KPE337MK5YEP9QF58P4/Finn+3+2025.jpeg Finnegan's Story Updated https://www.cacna1a.org/lisa-manaster daily 0.75 2025-08-04 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1730724760385-JHHDX42M32DWIYADR4GI/lynn.jpeg https://www.cacna1a.org/boardlandleadership daily 0.75 2026-01-31 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1730724760385-JHHDX42M32DWIYADR4GI/lynn.jpeg Board and Leadership - President: Lisa Manaster Lisa Manaster is eager to help build awareness and accelerate the discovery of treatments for CACNA1A. She lives in Connecticut and has three children, a daughter-in-law, and recently was blessed with her first grandchild! After years of genetic testing, her youngest daughter, Emily, finally received a diagnosis of CACNA1A in 2017 at the age of 20. While Lisa does not believe earlier identification would have changed their path, supporting research for a cure has become her passion. Lisa has worked as both an advocate and a special educator. She received interdisciplinary leadership training in the field of developmental disabilities as a Fellow in the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program at the Westchester Institute for Human Development. Lisa has a Bachelor of Arts in History from Cornell University and an MA from Teachers College, Columbia University. She is excited to be a founding partner of the CACNA1A Foundation and improve the lives of those affected by CACNA1A-related disorders. She believes that sharing your story with the world can effect change. Lisa@cacna1a.org https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1730724771088-QRHI9HBMJ3Z3GTC1JNSX/Sunitha.jpg Board and Leadership - Vice President & Treasurer: Sunitha Malepati Sunitha lives in Northern Virginia with her husband and two children. After nearly two years of consulting with various specialists and countless tests, in 2020, Sunitha learned that her daughter has a CACNA1A gene variant. The CACNA1A Foundation has been a tremendous source of hope and support for her family as they navigate their rare disease journey. Sunitha is honored to be a member of the CACNA1A Foundation's Board of Directors because she deeply believes in the promise of the Foundation's mission to accelerate the development of treatment options for CACNA1A children and shares the sense of urgency that drives the Foundation's work. Sunitha is also an attorney. She previously worked in the private investments group at an international law firm. She also represented small businesses and nonprofits in the DC metro area and taught at Georgetown Law. She is a Governing Board member of COMBINEDBrain, a nonprofit consortium devoted to speeding the path to clinical treatments for people with rare genetic neurodevelopmental disorders. Sunitha@cacna1a.org https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1730724778821-ATOV98PX27A638C43FZA/Amy.jpeg Board and Leadership - Secretary: Amy Junge Amy lives in southern California with her husband Mike and their three children. After years of mysterious medical challenges and misdiagnoses, their daughter was diagnosed in 2020 with a CACNA1A variant that also impacts their youngest son. Receiving the diagnosis was both a relief, to finally understand what was causing her medical issues, and scary, to not have a cure. Amy is honored to join the CACNA1A Foundation board and support the amazing work and advocacy the founders have done since starting the Foundation in 2020. She also deeply appreciates the connections to other CACNA1A families through the Foundation. Amy has a B.A. from Northwestern University and an M.A. from the University of California at Santa Barbara. A former middle school teacher and assistant principal, Amy now works for Education Evolving, an education non-profit as the Director of Teacher-Powered Schools supporting educator teams using collaborative leadership models at their sites. Amy@cacna1a.org https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1730725122847-VH0CLQ2ELBZKI7N3XD87/Allison.jpg Board and Leadership - Board Member: Allison Buchner Allison Buchner lives in Los Angeles with her husband and two daughters. In 2019, Allison’s oldest daughter, who was 10 years old at the time, was diagnosed with a CACNA1A gene variant. Allison believes that like her daughter, there are likely many undiagnosed CACNA1A children (and adults) in the world who have for years been given broader, umbrella diagnoses, like cerebral palsy, as they waited for science to discover the true cause of their movement disorders or other challenges. Her hope is that with awareness and research support, those with CACNA1A will have greater access to knowledgeable medical professionals and other service providers, and ultimately, to treatments. Allison is also a full-time attorney who specializes in intellectual property litigation, and she also has a robust pro bono practice, primarily focusing on special education law and legal advocacy for those with disabilities. She also serves on the Board of Directors for the Disabilities Rights Legal Center and WISHForward (which aims to empower all students through inclusive education). https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1743462600821-KEZQM6WNT4IVD2141ABP/CaseyDawley.png Board and Leadership - Board Member: Casey Dawley Casey lives in Syracuse, New York with his wife and their eight-year old son. After a two year diagnostic journey, his son was finally genetic tested, indicating a disease-causing CACNA1A variant. This led to a year with many questions and very few answers. The day the CACNA1A Foundation was announced was a day of hope and joy for Casey’s family as there was finally an answer to the question: “Who is focused on this disease?” Casey is excited to help the CACNA1A Foundation further globally expand its collaborative network of patients, families, clinicians and scientists on its mission for treatments and a cure. Casey retired from the United States Air Force after 20 years of service, including four years on a multinational staff at a NATO Command Headquarters. He holds a B.S. in both Computer Science and Management in Information Systems. Most recently, Casey worked as a contractor for the National Institutes of Health’s (NIH) Office of Financial Management and their NIH Business Systems. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1758682155402-9AYCPWD7UIMVV4W19C9G/Farley-Br+%281%29.jpeg Board and Leadership - Board Member: Brandon Farley, PhD Brandon Farley is a neuroscientist based in Cleveland, Ohio. He earned his Ph.D. in Neuroscience at the Massachusetts Institute of Technology (MIT) in the lab of Dr. Mriganka Sur, where he studied brain development and plasticity. He later worked at Biogen in the multiple sclerosis and ALS therapeutic areas, and then spent eight years at Sage Therapeutics. At Sage, he helped develop biomarkers such as EEG and brain imaging methods to support drug discovery and clinical trials, and led a team that advanced drug candidates from the early stages of research into the IND-enabling stage in preparation for clinical trials. Brandon’s connection to the CACNA1A Foundation is also personal. A close family member was diagnosed with episodic ataxia caused by a CACNA1A variant, an experience that opened his eyes to the challenges rare disease families face—finding an accurate diagnosis, managing symptoms that impact daily life, and navigating limited treatment options. Hearing the stories of other families in the CACNA1A community has deepened his appreciation for the Foundation’s mission and the power of connection. Brandon joined the Board of Directors in 2025 and is excited to contribute his background in neuroscience and drug development. He is especially grateful for the network of scientists, clinicians, and advocates he has built over the years, and looks forward to working together to advance research and provide stronger support for those affected by CACNA1A disorders. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1730725131564-B4RYS5T6Y55T5NCVQNI3/Sarah.jpeg Board and Leadership - Board Member: Sarah Greathouse Sarah lives in southeastern New Mexico with her husband, Clinton, and their six kids. In 2021, when their youngest daughter, Emarie, was two years old, she suddenly started having very dangerous apnea and loss of function episodes. After searching for answers in Texas, Colorado and Arizona, Emarie was diagnosed with a CACNA1A variant in November 2021. Receiving a diagnosis was what Sarah and Clinton thought they needed to find help for their daughter. Instead, they were told Emarie had a rare genetic disease that there was little information about and that no one was even sure how to help her, which they realized was almost as bad as having no diagnosis at all. It took them several months to get a genetic counselor to break down the genetic test results, and luckily, she told them about the CACNA1A foundation. Sarah says, "It was truly a blessing to know we were not alone anymore. I was able to email the Foundation website and talk to the President right away, which was life-changing for our family. Ever since we found our new 'family,' I have been passionate about connecting with newly diagnosed families in an effort to advocate for them and minimize the isolation of the unknown. There can be a lot of questions and not very many answers that come along with this diagnosis, so if we can just be there to offer support and any resources, it can make such a positive impact in a place that can be very difficult. I am also on a mission to raise awareness and do much-needed fundraising for the CACNA1A Foundation to achieve its ultimate goal of pushing science forward and finding a cure! I am honored to have the opportunity to join the board, and I am so excited for the future success of our CACNA1A champions!" Sarah graduated in 2017 with her Certified Medical Assistant degree through the American Academy of Medical Associates. She continues to take various continuing education courses each year in hopes of finishing her bachelor of science in nursing. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1730937510974-UQAEU3VASMI0E1ZB78Z8/23_CSP_Hala-Mirza_3652-web.jpg Board and Leadership - Board Member: Hala Mirza Hala Mirza is the Senior Vice President of Corporate Affairs & Patient Advocacy at Ionis Pharmaceuticals. She was previously Principal of Kaza Consulting, LLC, which provided corporate affairs and responsibility counsel to healthcare and nonprofit organizations. Before starting her own consultancy in 2022, Hala served for eight years as Senior Vice President, Corporate Communications and Citizenship at Regeneron, a leading biopharmaceutical company. At Regeneron, Hala led a high-performing team focused on corporate responsibility, environmental, social, governance (ESG) management, internal and external communications, executive visibility, philanthropy, employee volunteerism and patient advocacy. Hala joined Regeneron from Pfizer, where she was VP, Corporate Affairs for research and development. Previously in her career, Hala was at integrated communications firm W20 Group (now Real Chemistry), where she opened the agency’s first New York office in 2004 and played a key role in driving exponential growth over an eight-year tenure. Hala began her career in the nonprofit sector, serving as Public Relations Officer at the American Red Cross Biomedical Services in the late 1990s. Hala has served on the Boards of NewYorkBIO and the Society for Science. She has been recognized as a Responsible 100 from City & State Magazine. Hala holds a BA in English Literature from George Washington University. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1730725144045-A0U346N5X92S4DX01MTE/Deborah.jpg Board and Leadership - Board Member: Deborah Ondrasik, MD Dr. Deborah Ondrasik lives in Rhode Island with her husband Nick and 3 beautiful children ages 5, 8, and 10. Her oldest daughter, Gabrielle, was diagnosed with CACNA1A-associated Epileptic Encephalopathy in 2015. At the time, she was told Gabby was the only person in the US with this rare genetic mutation. Gabby has intractable epilepsy, ataxia, autism spectrum disorder, and intellectual disability. Dr. Ondrasik earned her MD from Drexel University College of Medicine and completed her pediatric residency in Honolulu, Hawaii through the Uniformed Services Health Professions Scholarship Program. She completed 6 years of service for the US Army, including a deployment to Iraq. She is a board-certified Pediatrician, working in a primary care clinic on the South Coast of Massachusetts. Her passion is to increase awareness among physicians on the advances in genetics and the positive impact a genetic diagnosis can have for a child and their family. Dr. Ondrasik divides her journey into pre-Foundation and post-Foundation chapters. Having found the Foundation 5 years after Gabrielle’s diagnosis, she is overcome by the support, community, purpose, and hope that has come through the CACNA1A Foundation. She is absolutely thrilled to join the Board and to use her voice as a pediatrician and mother to help make a difference for all children living with a rare disease. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1730725151761-IQNJKYJHREY2MMXN5H4G/Michael.jpeg Board and Leadership - Board Member: Michael Strupp, MD, FRCP, FANA, FEAN, FAAN Professor Dr. Michael Strupp is a Professor of Neurology and Clinical Neurophysiology at the Department of Neurology and German Centre for Vertigo and Balance Disorders at the Ludwig Maximilians University Hospital in Munich, Germany, where he specializes in vestibular, ocular motor, cerebellar and movement disorders. He studied medicine at the Technical University of Aachen and the University of Rochester, N.Y. Since then, he has been a passionate clinician, seeing patients daily, which is his motivation and driving force in science. Prof. Dr. Strupp's extensive research, which includes 478 papers listed on PubMed (h-index 98) and five books on vertigo, dizziness, and ocular motor disorders, is a testament to his deep understanding of the field. Throughout his career, he has designed and performed 15 investigator initiated clinical trials. He has received numerous clinical and scientific awards. His many significant scientific achievements include the introduction of the potassium channel blocker 4-aminopyridine for the treatment of downbeat nystagmus and episodic ataxia type 2. More recently he and his team applied the modified amino acid Acetyl-leucine in the treatment of ataxias, Niemann-Pick Type C (NPC) and GM2-gangliosidoses, rare lysosomal storage disorders. In addition, in a paper he senior-authored in Nature Communications (Sept 2024), acetyl-leucine was able to halt the progression of Parkinson's disease in the prodromal phases of the disease and improve disease imaging markers. He is also a Founding Scientist at IntraBio, a biopharmaceutical company that is a leader in the discovery and development of innovative drugs for rare neurodegenerative diseases with high unmet needs. On September 25, 2024, IntraBio announced that they received FDA approval for AQNEURSA, a well-tolerated drug for the treatment of NPC in adults and pediatric patients. Prof. Dr. Strupp and the IntraBio team believe AQNEURSA can potentially treat other neurodevelopmental disorders, including patients with CACNA1A mutations and are committed to addressing those indications in the future. Michael Strupp has four children, is an avid exercise enthusiast, and particularly enjoys biking and playing the piano. We are honored to have him join our board. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1755043198436-1OA1J7A4EPRAX5526MWE/Shira+Johnson+headshot.jpeg Board and Leadership - Executive Director: Shira Johnson Shira joins CACNA1A Foundation with over 20 years of experience working with nonprofits in a variety of executive roles. Her experience includes 5 years in the rare disease space at the Phelan-McDermid Syndrome Foundation. She is passionate about working with families and ensuring the lived experience of patients is at the forefront of her work. Her specialties include program development and evaluation, fundraising, community engagement, strategic planning, and board relations. Shira is a graduate of the Harry S. Truman School of Public Affairs at the University of Missouri where she received her Master of Public Administration. Additionally, she received her Bachelor of Science in Family Studies from the University of Maryland. Shira is a Certified Fund Raising Executive (CFRE). She currently lives in Sarasota, FL with her husband, 13-year-old daughter, two goldendoodles, and the family’s horse (who resides at a local barn). Shira@cacna1a.org https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1730726571675-DYMRB4ERAW3KXFSSLM4O/Pangkong%2Band%2BAlex%2B2022.jpg Board and Leadership - Science Engagement Director: Pangkong Fox, PhD Pangkong lives in Southeastern Wisconsin with her two kids and husband. Her youngest son was diagnosed with a CACNA1A-related disorder in December of 2021. Until then, the doctors and specialists her son had seen for years could not pinpoint an underlying cause for his ataxia and global developmental delays. However, a tentative diagnosis of left-hemiparesis eventually led to genetic screening of the cerebral palsy gene panel and the discovery of his CACNA1A variant. Pangkong set out to learn as much as she could about this rare condition and found the CACNA1A Foundation and its amazing team. She is honored, excited, and motivated to use her experience as a scientist, educator, and parent of a child with a CACNA1A variant, to connect the CACNA1A research world with the CACNA1A patients and families. She is a proponent of "conversational science" and her goal is to provide families with the support and resources to comfortably talk about CACNA1A to anyone who asks and to help bring awareness to this rare disease. She is also ready to help the board and research collaborators continue to drive the translational research needed to find treatments for CACNA1A patients on the pathway to a cure. Pangkong received her Bachelor's Degree in Biology from the University of Wisconsin-Madison and her PhD in Cell & Molecular Biology from Indiana University. She continued her postdoctoral research at Northwestern University and has taught at Northern Illinois University, Kishwaukee College, and Aurora University. She had the opportunity to be a stay-at-home mom to care for both of her kids for the past few years before joining the Foundation's team. 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This is Emily at her high school graduation with her siblings. Emily has a CACNA1A variant. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1656262076934-5380KQPNSPG98A03XEB0/Screen+Shot+2022-06-26+at+12.27.55+PM.png Newly Diagnosed - Click video to watch (Copy) https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1656262278060-EZX9L2LXYQ7SSWV7HOMK/Screen+Shot+2022-06-26+at+12.50.44+PM.png Newly Diagnosed https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1656262104389-OCI9QOUS8P0I8NBAU7DF/Screen+Shot+2022-06-26+at+12.44.54+PM.png Newly Diagnosed https://www.cacna1a.org/martis-story daily 0.75 2025-07-28 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/29f2f12f-cc5d-4d68-8ad5-eee90389cc4e/IMG_2212+%281%29.jpeg Martí's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/d35aa63f-971a-44f9-b13b-132e576b8d90/IMG_2299.jpeg Martí's Story - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/f11e4bf3-434b-4fa1-9c05-fd7b7a83e19d/IMG_2266.jpeg Martí's Story - Make it stand out Whatever it is, the way you tell your story online can make all the difference. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1753734013749-QCNDXLQAJGCYSQI1CAGC/IMG_2443.jpeg Martí's Story https://www.cacna1a.org/shira daily 0.75 2025-09-08 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/9bdce570-22c3-4474-aa8d-dc6920d24a4a/Shira+Johnson+headshot.jpeg https://www.cacna1a.org/frantzs-story-1 daily 0.75 2025-08-23 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/a20b609b-6406-4b99-931a-186a5afecb3a/IMG_1158+%282%29.JPEG Frantz's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1755908559052-5ALX8LS2IR0WBA8OWX9R/image8.jpeg Frantz's Story 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https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/6b392be0-365e-422a-8c6e-9f82a170c76c/Screenshot+2025-09-11+at+8.54.16+PM.png News and Press https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1590775275922-JSV43Q2T468BZO503JIM/tolbert-family-session--29.jpg News and Press https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/a29edbd7-4963-4239-ae0b-91a97173cba0/Screenshot+2025-09-11+at+9.36.28+PM.png News and Press https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/5d1ba58b-bb91-4fda-aa70-141a2c393d88/Screenshot+2025-09-11+at+9.50.40+PM.png News and Press https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/307a4ae4-db38-4493-9fb6-a66c6d27b126/Screenshot+2025-09-11+at+9.50.40+PM.png News and Press https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/03bdc89e-6054-4b8c-b262-bb003c77e8ba/Screenshot+2026-01-16+at+4.16.28%E2%80%AFPM.png News and Press https://www.cacna1a.org/brandon daily 0.75 2025-09-24 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/a3427e5d-792b-41ef-9b18-0e1f9491215e/Farley-Br.jpg https://www.cacna1a.org/globalambassadors daily 0.75 2025-10-18 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/7ba62ee1-8b4b-4fea-8188-551cfd12123a/iStock-991416574.jpg https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1759762112036-5L8C5W38OPC1XJ25H7UB/Untitled+design+%2841%29.jpg Global Ambassadors - Australia: Christina Tee & Chris Senaratne Christina Tee and Chris Senaratne live in Melbourne, Australia, with their daughter Elise (4). Elise was diagnosed with a CACNA1A variant in March 2022 after they searched for a diagnosis for about two years. Elise was the most beautiful baby, and Christina and Chris’ whole world shattered when their pediatrician told them that she had global developmental delays at 13 months old, as she was not meeting her gross motor, fine motor, and language milestones. Christina and Chris lived in a back-and-forth state of grief and denial that their baby may not eventually catch up with her peers until they received Elise's diagnosis and found the CACNA1A Foundation on Google in 2022. Having a diagnosis and the CACNA1A family as a support has helped them not only accept Elise's differences but also to embrace and celebrate all of her abilities and accomplishments. As Parent Ambassadors in Australia, Christina and Chris aim to raise awareness of CACNA1A in their community and support other CACNA1A families in any way possible. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1760968190045-56R0VGKJK8IRX9ZCQBZK/Add+a+heading+%286%29.png Global Ambassadors - China: Jinghan (Jane) https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1759714468931-8DC2H4OJ7BBEHBON1WD1/Screenshot+2025-10-05+at+9.33.49+PM.jpg Global Ambassadors - DACH Region: Heidi (Austria), Joseph (Germany), Sabrina (Switzerland) Wir– Heidi aus Österreich, Joseph aus Deutschland und Sabrina aus der Schweiz – sind die CACNA1A-Ambassadors für den deutschsprachigen Raum (DACH). Uns verbindet nicht nur die gemeinsame genetische Diagnose unserer Kinder, sondern auch der Wunsch, anderen betroffenen Familien Halt zu geben, Austausch zu fördern und die Vernetzung im deutschsprachigen Raum voranzutreiben. Heidi erhielt die Diagnose CACNA1A bei ihrer Tochter Magdalena (3) im Alter von 13 Monaten, nachdem bereits früh epileptische Anfälle, eine Bewegungsstörung und eine Entwicklungsverzögerung aufgetreten waren. Magdalena liebt Musik, ist neugierig und lebensfroh, mit einem herzlichen Wesen, das sofort Verbindungen schafft. Für Heidis Familie ist der Erfahrungsaustausch eine große Ressource. Sie möchten ihr Wissen weitergeben und andere Familien ermutigen, sich zu vernetzen – denn auch wenn eine genetische Erkrankung viele Unsicherheiten mit sich bringt, lehrt sie, die kleinen Erfolge zu feiern. Josephs Tochter Marie (16) bekam ihre CACNA1A-Diagnose mit fünf Jahren – vorher stand die Ataxie im Vordergrund. Die Diagnose brachte endlich Klarheit und neue Wege, wie man sie gezielt unterstützen kann. Mit fünf Jahren konnte sie weder verständlich sprechen noch alleine gehen – heute tut sie beides. Joseph möchte insbesondere die Forschung im DACH-Raum besser vernetzen, andere CACNA1A-Familien finden und mit ihnen Erfahrungen teilen. Denn aus dem Austausch erwächst Wissen – und Hoffnung. Sabrina lebt in der Schweiz mit ihrem Sohn Samuel (geboren 2024), bei dem ebenfalls eine CACNA1A-Variante diagnostiziert wurde. Als jüngstes Mitglied im DACH-Botschafterteam bringt Sabrina die Perspektive einer Familie mit einem sehr kleinen Kind ein, bei dem noch vieles offen ist. Gerade am Anfang ist es enorm wertvoll, sich mit anderen vernetzen zu können, nicht allein zu sein und auf Unterstützung und Informationen zurückgreifen zu können. Gemeinsam wollen wir: die Sichtbarkeit von CACNA1A im deutschsprachigen Raum stärken, Familien miteinander verbinden, den Erfahrungsaustausch fördern und zur internationalen Forschung beitragen. Wenn du in Deutschland, Österreich oder der Schweiz lebst und von CACNA1A betroffen bist – melde dich bei uns. Du bist nicht allein. We – Heidi from Austria, Joseph from Germany, and Sabrina from Switzerland – are the CACNA1A Ambassadors for the German-speaking DACH region. What unites us is not only the CACNA1A diagnosis our children share, but also a strong desire to support other affected families, foster connection, and promote awareness and research throughout the DACH community. Heidi’s daughter, Magdalena (3), received her CACNA1A diagnosis at 13 months old, after early seizures, a movement disorder, and developmental delays raised concerns. Magdalena is a curious, joyful child who loves music and makes connections easily with her warm personality. For Heidi’s family, sharing experiences has been an invaluable source of strength. They are passionate about building community and exchanging knowledge – because while a genetic diagnosis can bring many uncertainties, it also teaches us to celebrate small victories and appreciate every moment. Joseph’s daughter Marie (16) was diagnosed with CACNA1A at the age of five, after years of living with unexplained ataxia. The diagnosis finally brought clarity and a new path for providing the proper support. At five, Marie was unable to walk independently or speak clearly – today, she can do both. Joseph is particularly passionate about advancing CACNA1A research in the DACH region, connecting with other families, and helping build a stronger network of shared experience and knowledge. He believes that through community, we grow stronger—and more hopeful. Sabrina, based in Switzerland, is the mother of Samuel (born 2024), who also carries a CACNA1A variant. As the newest member of our DACH ambassador team, she brings the perspective of a family at the very beginning of this journey, where much is still unknown. In these early stages, being able to connect with others and feel supported makes all the difference. Together, we aim to: raise awareness of CACNA1A-related disorders across German-speaking countries, connect and support families in Austria, Germany, and Switzerland, share knowledge and lived experiences, and contribute to international efforts in CACNA1A research. If you live in Germany, Austria, or Switzerland and are affected by CACNA1A, we are here. You are not alone. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1759715914820-UJE679FAC2489SB5A75Q/Screenshot+2025-10-05+at+9.57.54+PM.jpg Global Ambassadors - Italy: Valentina Bolletta, Cristina Labarile, and Luciana Cuccuru Valentina, Cristina e Luciana hanno età e background diversi, ma ciò che le accomuna è la diagnosi delle figlie, portatrici della mutazione del gene CACNA1A.Giulia, la maggiore, ha 28 anni. La sua mutazione è stata scoperta solo pochi anni fa, dopo aver passato gli anni dell'infanzia e dell'adolescenza a cercare una spiegazione alla sua atassia, alle sue crisi epilettiche, poco frequenti ma spesso gravi, alla sua i problemi. Virginia ha 8 anni, anche lei ha avuto a che fare con crisi epilettiche importanti e con disfunzioni motorie. È una bambina tenace, sensibile e molto affettuosa. Camilla è la più piccola, 4 anni, vivace e determinata, a cui è stata diagnosticata la mutazione CACNA1A a seguito di un ritardo delle sue funzioni motorie, ma ad oggi i suoi sintomi rimangono meno accentuati. Recentemente, le è stata data una seconda diagnosi, una malattia genetica da accumulo lisosomiale. Nonostante le rispettive famiglie affrontino sfide diverse tra loro, Cristina, Valentina e Luciana trovano conforto e incoraggiamento nel condividere la loro esperienza, i momenti difficili ma anche le piccole grandi conquiste della vita quotidiana. Sono in contatto con un gruppo di famiglie colpite dalla stessa mutazione, ma il loro obiettivo è quello di coinvolgere quante più persone possibile, sensibilizzando nell'ambito della medicina, delle organizzazioni e del volontariato, per costruire in Italia una rete forte che possa affiancare la Fondazione statunitense CACNA1A. Credevano fermamente che unire le forze fosse l'unico modo per influenzare la ricerca per promuovere studi genetici e clinici che un giorno potrebbero informare il trattamento e i modi per gestire la vita delle persone portatrici della mutazione CACNA1A. Valentina, Cristina, and Luciana have children of varied ages and backgrounds, but what brings them together is their daughters' diagnoses of a CACNA1A gene mutation. Luciana's daughter, Giulia, is the eldest, at 28. Her mutation was only discovered a few years ago, after having spent her childhood and adolescence looking for an explanation for her ataxia, her not very frequent but severe epileptic seizures, and her cognitive issues. Cristina's daughter, Virginia, a tenacious, sensitive, and very affectionate child, is eight years old and struggles with significant epileptic seizures and motor dysfunction. Valentina's daughter, Camilla, the youngest at four years old, is lively and determined. She was diagnosed with a CACNA1A mutation following a delay in her motor functions and, recently, has been given a second diagnosis of a genetic lysosomal storage disease. Although their respective families face challenges that differ from each other, Valentina, Cristina and Luciana find comfort and encouragement in sharing their experiences, the difficult moments, and the often small but monumental achievements of everyday life. Their goal is to find and involve the patients and families in Italy and raise awareness about the disease to build a strong network that will work alongside the US-based CACNA1A Foundation. They firmly believe that joining forces is the only way to influence research to promote genetic and clinical studies that may someday inform treatment and ways to manage the lives of individuals with CACNA1A variants. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1760750614933-X5CR216B0SCV0TKK7Y4E/Gareth+%2B+Norah+02.png Global Ambassadors - UK: Gareth Belsey Gareth Belsey lives in London, UK, and is the proud uncle of two-year-old Norah, who was diagnosed with CACNA1A in November 2024. Norah was first diagnosed with global developmental delay, prompting Gareth’s sister and her husband to consult a neurologist to explore possible underlying causes. Initial tests were inconclusive, so the family pursued genetic sequencing, which ultimately revealed a de novo CACNA1A variant. “Our family’s journey with CACNA1A has been deeply emotional and filled with uncertainties,” Gareth shares. “Yet through it all, Norah has shown extraordinary strength and resilience.” With the love and support of her devoted parents, her granny, extended family, and local specialists, Norah has made remarkable developmental progress in recent months. Although she isn’t walking yet, Norah is making strides—literally—with the help of daily physiotherapy, her new walker, and parallel support bars. She astonishes everyone with her speedy bum-shuffling and her fierce determination to explore the world in her own way and at her own pace. Every milestone, big or small, is celebrated with joy. “Norah is the most joyful, mischievous, and loving little girl—full of determination and spirit. Her courage inspires us every day.” Gareth hopes that by establishing a support group for UK-based families, and by sharing experiences, families can feel more connected and supported as they navigate the unique challenges of CACNA1A together. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1759761014605-MF6FU2D0V4GY61ALJJ97/Screenshot+2025-10-06+at+10.24.13+AM.jpg Global Ambassadors - Arizona: Angelita Landa We are the Flores family from Glendale, Arizona — mom Angelita Landa, and daughter Melanie Flores (7). Melanie was born prematurely at just 34 weeks. By six months old, she began receiving physical, occupational, and speech therapy. As she grew, we still didn’t have clear answers to the challenges she was facing. At two years old, Melanie was diagnosed with cerebral palsy. Despite the diagnosis, she continued to work hard and make steady progress toward her developmental goals. After many specialist visits and referrals, we were referred to genetic testing. In June 2021, Melanie was diagnosed with a rare genetic mutation in the CACNA1A gene. It took nearly a year before we connected with the CACNA1A Foundation, where we found answers, support, and a community of families facing similar journeys. While these challenges have shaped Melanie's path, they do not define her. She is full of joy, resilience, and determination, and we continue to celebrate every milestone and achievement, big or small. As a Parent Ambassador for the state of Arizona, I hope to bring greater awareness to CACNA1A-related disorders, build a network of support, and help guide other families walking this path. No one should feel alone on this journey, and we are honored to be part of a community that lifts one another up. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1759761211603-5K8GJSMRJAQBA5DJ5QOS/20220722_153427+%281%29.jpg Global Ambassadors - New York: Sonjia and Casey Dawley Sonjia and Casey Dawley live in Syracuse, New York, with their son Avery. Avery was born in 2016 and, close to a year later, exhibited a regression in skills, which led to their nearly two-year diagnostic journey. Once diagnosed, the Dawley family fell into an information vacuum, feeling lost and alone. Finding the CACNA1A/Cav 2.1 & Co. Facebook group was wonderful, as they had found about 40 other families who had a similar shared journey. As Volunteer CACNA1A Ambassadors for New York State, Sonjia and Casey aim to establish a community of and for individuals affected by CACNA1A-related disorders in New York State. Their goal is to build strong relationships with families who are willing to help one another, whether it is through recommending specialists or simply being empathetic listeners. https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1759761281596-8E1SI5KNQYSSNS0C4VBC/Screenshot+2025-10-06+at+10.33.56+AM.jpg Global Ambassadors - Texas: Theresa Spong Theresa Spong resides outside of Austin, TX. She is the grandmother of a 4-year-old child with CACNA1A. Louise was diagnosed at the age of one. I still recall sitting on the sofa beside my daughter, Brittany, when we received the diagnosis. It was devastating to hear phrases such as "not much is known", "it is incredibly rare", and "there is no treatment or cure". Our family found substantial support and a warm welcome in the CACNA1A Foundation. Their leaders provided valuable resources, including the latest scientific information and emotional support for our entire family. For the past three years, I have been volunteering with the Foundation, contributing in a meaningful way to this pioneering organization. With a background in Pediatric Physical Therapy, I have always had a passion for working with children and adults with disabilities. I am enthusiastic about serving as the Texas Ambassador for the CACNA1A Foundation, where I aim to raise awareness within our communities, share local and state resources, connect families with the latest scientific information available from the Foundation, and, most importantly, support families on their journey. https://www.cacna1a.org/australia daily 0.75 2025-10-18 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/d9178ff5-4e2a-4087-b597-90e1455111d3/Australia+.png https://www.cacna1a.org/dach daily 0.75 2025-10-09 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/20b92850-d8bf-4ea5-b4e4-81ee9c8213fe/Add+a+heading+%284%29.png https://www.cacna1a.org/italy daily 0.75 2025-10-09 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/07e35736-3b20-4fde-a91d-cd1434794ee4/Add+a+heading.png https://www.cacna1a.org/arizonaambassador daily 0.75 2025-10-18 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/bf9e642f-f546-46a9-8083-ae69d231fdaf/Screenshot+2025-10-17+at+7.56.31+PM.png https://www.cacna1a.org/newyorkambassador daily 0.75 2025-10-18 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/05734d47-fdff-42d2-b1fe-5488e8f263ff/20220722_153427+%281%29.jpg https://www.cacna1a.org/texasambassador daily 0.75 2025-10-18 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/2fb59e2e-fc83-481f-992b-60bf860bad70/Screenshot+2025-10-06+at+10.33.56+AM.jpg https://www.cacna1a.org/ukambassador daily 0.75 2025-10-18 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/06142ed8-e321-4045-9059-4573fa00b979/Gareth+%2B+Norah+02+%281%29.png https://www.cacna1a.org/chinaambassador daily 0.75 2025-10-28 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/aaa7ea3c-af35-44e1-9460-da7ab0e31f67/Add+a+heading+%286%29.png https://www.cacna1a.org/colsons-story daily 0.75 2025-11-11 https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/4bbb5121-5b45-4954-af1c-33d445de8be8/colton.jpg Colson's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1762740386475-STQSQU6RUFVZQEPJE1A6/IMG_6442.jpg Colson's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1762740286985-W9F7VNFRHADLXWII8IXE/IMG_4725.jpg Colson's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1762740340652-9ZRK7832EWYLVJKZZ5SV/IMG_7456.JPG Colson's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1762740341914-S3PSXWNK6G1PRTZRFNR7/IMG_7419.jpg Colson's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1762740351930-2DA4Q5LO9RWITGCRMJWI/IMG_7199.JPG Colson's Story https://images.squarespace-cdn.com/content/v1/5e9a4896f1b6273a710f8afc/1762740574843-1GOROKMNHRD5RA2VNHT6/IMG_7662.jpeg Colson's Story 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