Diagnosing ALD — The Stop ALD Foundation

<!doctype html> <html xmlns:og="http://opengraphprotocol.org/schema/" xmlns:fb="http://www.facebook.com/2008/fbml" lang="en-US" > <head> <meta http-equiv="X-UA-Compatible" content="IE=edge,chrome=1"> <meta name="viewport" content="initial-scale=1">  <base href=""> <meta charset="utf-8" /> <title>Diagnosing ALD — The Stop ALD Foundation</title> <meta http-equiv="Accept-CH" content="Sec-CH-UA-Platform-Version, Sec-CH-UA-Model" /><link rel="icon" type="image/x-icon" href="https://images.squarespace-cdn.com/content/v1/52e89bfae4b06b90fc8aa357/1515085915509-YLS7IBDXVVMPABRTYDBW/favicon.ico?format=100w"/> <link rel="canonical" href="http://www.stopald.org/diagnosis"/> <meta property="og:site_name" content="The Stop ALD Foundation"/> <meta property="og:title" content="Diagnosing ALD — The Stop ALD Foundation"/> <meta property="og:url" content="http://www.stopald.org/diagnosis"/> <meta property="og:type" content="website"/> <meta itemprop="name" content="Diagnosing ALD — The Stop ALD Foundation"/> <meta itemprop="url" content="http://www.stopald.org/diagnosis"/> <meta name="twitter:title" content="Diagnosing ALD — The Stop ALD Foundation"/> <meta name="twitter:url" content="http://www.stopald.org/diagnosis"/> <meta name="twitter:card" content="summary"/> <meta name="description" content="" /> <link rel="preconnect" href="https://images.squarespace-cdn.com"> <script type="text/javascript" src="//use.typekit.net/ik/8uK8ER-z5We79D6JsHssKp1bW0G1pp5bWiJOmKWWPytfeC3gfFHN4UJLFRbh52jhWD9kZQ6ojcZyZQsKw2ZK5QgcjDyyjQwuFUTmiaiaO1FXdagydeb0da41OYFXdagydeb0da41OYFXZWZ8OA4yS1FGO1FUiABkZWF3jAF8OcFzdP37O1FXZWZ8OA4yS1FGO1FUiABkZWF3jAF8OcFzdPJwSY4zpe8ljPu0daZyH6qJtKGbMg62JMJ7fbKlMsMMeMj6MKG4fJCgIMMjgkMfH6qJtkGbMg6FJMJ7fbK0MsMMegM6MKG4fJ3gIMMjIPMf.js"></script> <script type="text/javascript">try{Typekit.load();}catch(e){}</script> <link rel="stylesheet" type="text/css" href="https://fonts.googleapis.com/css2?family=Varela+Round:ital,wght@0,;0,400;0,700;1,;1,400;1,700"> <script type="text/javascript" crossorigin="anonymous" defer="defer" nomodule="nomodule" src="//assets.squarespace.com/@sqs/polyfiller/1.6/legacy.js"></script> <script type="text/javascript" crossorigin="anonymous" defer="defer" src="//assets.squarespace.com/@sqs/polyfiller/1.6/modern.js"></script> <script type="text/javascript">SQUARESPACE_ROLLUPS = {};</script> <script>(function(rollups, name) { if (!rollups[name]) { rollups[name] = {}; } rollups[name].js = ["//assets.squarespace.com/universal/scripts-compressed/extract-css-runtime-069e2954daea8a620b50-min.en-US.js"]; })(SQUARESPACE_ROLLUPS, 'squarespace-extract_css_runtime');</script> <script crossorigin="anonymous" src="//assets.squarespace.com/universal/scripts-compressed/extract-css-runtime-069e2954daea8a620b50-min.en-US.js" defer ></script><script>(function(rollups, name) { if (!rollups[name]) { rollups[name] = {}; } rollups[name].js = ["//assets.squarespace.com/universal/scripts-compressed/extract-css-moment-js-vendor-6c569122bfa66a51a056-min.en-US.js"]; })(SQUARESPACE_ROLLUPS, 'squarespace-extract_css_moment_js_vendor');</script> <script crossorigin="anonymous" src="//assets.squarespace.com/universal/scripts-compressed/extract-css-moment-js-vendor-6c569122bfa66a51a056-min.en-US.js" defer ></script><script>(function(rollups, name) { if (!rollups[name]) { rollups[name] = {}; } rollups[name].js = ["//assets.squarespace.com/universal/scripts-compressed/cldr-resource-pack-32136deb9638cc6130b2-min.en-US.js"]; })(SQUARESPACE_ROLLUPS, 'squarespace-cldr_resource_pack');</script> <script crossorigin="anonymous" src="//assets.squarespace.com/universal/scripts-compressed/cldr-resource-pack-32136deb9638cc6130b2-min.en-US.js" defer ></script><script>(function(rollups, name) { if (!rollups[name]) { rollups[name] = {}; } rollups[name].js = ["//assets.squarespace.com/universal/scripts-compressed/common-vendors-stable-61293f01d648eef165fc-min.en-US.js"]; })(SQUARESPACE_ROLLUPS, 'squarespace-common_vendors_stable');</script> <script crossorigin="anonymous" src="//assets.squarespace.com/universal/scripts-compressed/common-vendors-stable-61293f01d648eef165fc-min.en-US.js" defer ></script><script>(function(rollups, name) { if (!rollups[name]) { rollups[name] = {}; } rollups[name].js = ["//assets.squarespace.com/universal/scripts-compressed/common-vendors-be0091dc488b10891ed6-min.en-US.js"]; })(SQUARESPACE_ROLLUPS, 'squarespace-common_vendors');</script> <script crossorigin="anonymous" src="//assets.squarespace.com/universal/scripts-compressed/common-vendors-be0091dc488b10891ed6-min.en-US.js" defer ></script><script>(function(rollups, name) { if (!rollups[name]) { rollups[name] = {}; } rollups[name].js = ["//assets.squarespace.com/universal/scripts-compressed/common-2d1a2dc371a8de03ebe4-min.en-US.js"]; })(SQUARESPACE_ROLLUPS, 'squarespace-common');</script> <script crossorigin="anonymous" src="//assets.squarespace.com/universal/scripts-compressed/common-2d1a2dc371a8de03ebe4-min.en-US.js" defer ></script><script>(function(rollups, name) { if (!rollups[name]) { rollups[name] = {}; } rollups[name].js = ["//assets.squarespace.com/universal/scripts-compressed/performance-d9f618c1beaea97b6499-min.en-US.js"]; })(SQUARESPACE_ROLLUPS, 'squarespace-performance');</script> <script crossorigin="anonymous" src="//assets.squarespace.com/universal/scripts-compressed/performance-d9f618c1beaea97b6499-min.en-US.js" defer ></script><script data-name="static-context">Static = window.Static || {}; Static.SQUARESPACE_CONTEXT = {"betaFeatureFlags":["scripts_defer","fluid_engine_clean_up_grid_contextual_change","pages_panel_v3_search_bar","accounting_orders_sync","nested_categories_migration_enabled","campaigns_discount_section_in_automations","enable_css_variable_tweaks","contacts_and_campaigns_redesign","unify_edit_mode_p2","campaigns_global_uc_ab","i18n_beta_website_locales","toggle_preview_new_shortcut","hide_header_footer_beta","campaigns_import_discounts","campaigns_discount_section_in_blasts","hideable_header_footer_for_memberareas","order_status_page_checkout_landing_enabled","campaigns_black_friday_banners","is_feature_gate_refresh_enabled","hideable_header_footer_for_videos","visitor_react_forms","hideable_header_footer","hideable_header_footer_for_courses","gdpr_cookie_banner","fluid_engine","commerce_site_visitor_metrics","campaigns_thumbnail_layout","blueprint_content_replacement","commerce_clearpay","marketing_landing_page","campaigns_new_image_layout_picker"],"videoAssetsFeatureFlags":["mux-data-video-collection","mux-data-course-collection"],"facebookAppId":"314192535267336","facebookApiVersion":"v6.0","rollups":{"squarespace-announcement-bar":{"js":"//assets.squarespace.com/universal/scripts-compressed/announcement-bar-abc247145d9c909b7ca1-min.en-US.js"},"squarespace-audio-player":{"css":"//assets.squarespace.com/universal/styles-compressed/audio-player-ef238f99d44a3bdc6fbe-min.en-US.css","js":"//assets.squarespace.com/universal/scripts-compressed/audio-player-7b2d6f5ce8ae62cf892f-min.en-US.js"},"squarespace-blog-collection-list":{"css":"//assets.squarespace.com/universal/styles-compressed/blog-collection-list-8ec841cacfb75d4282f4-min.en-US.css","js":"//assets.squarespace.com/universal/scripts-compressed/blog-collection-list-44fda292525bdeb0ee8a-min.en-US.js"},"squarespace-calendar-block-renderer":{"css":"//assets.squarespace.com/universal/styles-compressed/calendar-block-renderer-b15e2d46a617c8add4b4-min.en-US.css","js":"//assets.squarespace.com/universal/scripts-compressed/calendar-block-renderer-ba9e797b1c6edb9a3bac-min.en-US.js"},"squarespace-chartjs-helpers":{"css":"//assets.squarespace.com/universal/styles-compressed/chartjs-helpers-9e75b5d75bb5cb4c1f67-min.en-US.css","js":"//assets.squarespace.com/universal/scripts-compressed/chartjs-helpers-6f4b03f58cff68354645-min.en-US.js"},"squarespace-comments":{"css":"//assets.squarespace.com/universal/styles-compressed/comments-a0d9356d7c1596ab2c53-min.en-US.css","js":"//assets.squarespace.com/universal/scripts-compressed/comments-80a567d7afca7ea1dbfe-min.en-US.js"},"squarespace-custom-css-popup":{"css":"//assets.squarespace.com/universal/styles-compressed/custom-css-popup-d6e0f953c836d9289b10-min.en-US.css","js":"//assets.squarespace.com/universal/scripts-compressed/custom-css-popup-2e8bb2097a78eeeb6383-min.en-US.js"},"squarespace-dialog":{"css":"//assets.squarespace.com/universal/styles-compressed/dialog-2dcac307baebe70727dc-min.en-US.css","js":"//assets.squarespace.com/universal/scripts-compressed/dialog-dbb8daeadaf90e62b274-min.en-US.js"},"squarespace-events-collection":{"css":"//assets.squarespace.com/universal/styles-compressed/events-collection-b15e2d46a617c8add4b4-min.en-US.css","js":"//assets.squarespace.com/universal/scripts-compressed/events-collection-297bf44c7cd0c7f15d78-min.en-US.js"},"squarespace-form-rendering-utils":{"js":"//assets.squarespace.com/universal/scripts-compressed/form-rendering-utils-a92219a77cf6d4679390-min.en-US.js"},"squarespace-forms":{"css":"//assets.squarespace.com/universal/styles-compressed/forms-b952cddb94c5d471b8d3-min.en-US.css","js":"//assets.squarespace.com/universal/scripts-compressed/forms-49fd9d5237aa589917dd-min.en-US.js"},"squarespace-gallery-collection-list":{"css":"//assets.squarespace.com/universal/styles-compressed/gallery-collection-list-8ec841cacfb75d4282f4-min.en-US.css","js":"//assets.squarespace.com/universal/scripts-compressed/gallery-collection-list-dabc951e1bbbe8467525-min.en-US.js"},"squarespace-image-zoom":{"css":"//assets.squarespace.com/universal/styles-compressed/image-zoom-8ec841cacfb75d4282f4-min.en-US.css","js":"//assets.squarespace.com/universal/scripts-compressed/image-zoom-485cb3cf26fda8199e47-min.en-US.js"},"squarespace-pinterest":{"css":"//assets.squarespace.com/universal/styles-compressed/pinterest-8ec841cacfb75d4282f4-min.en-US.css","js":"//assets.squarespace.com/universal/scripts-compressed/pinterest-7ad9f70c56d9c6b0ae65-min.en-US.js"},"squarespace-popup-overlay":{"css":"//assets.squarespace.com/universal/styles-compressed/popup-overlay-e89b4cc96c222ed66c64-min.en-US.css","js":"//assets.squarespace.com/universal/scripts-compressed/popup-overlay-ece7db5c4bfceb54a50a-min.en-US.js"},"squarespace-product-quick-view":{"css":"//assets.squarespace.com/universal/styles-compressed/product-quick-view-2f87c3dcb76ca485179d-min.en-US.css","js":"//assets.squarespace.com/universal/scripts-compressed/product-quick-view-3c6b64e906196e37ee93-min.en-US.js"},"squarespace-products-collection-item-v2":{"css":"//assets.squarespace.com/universal/styles-compressed/products-collection-item-v2-8ec841cacfb75d4282f4-min.en-US.css","js":"//assets.squarespace.com/universal/scripts-compressed/products-collection-item-v2-1ed64b36a5caefb0bf3d-min.en-US.js"},"squarespace-products-collection-list-v2":{"css":"//assets.squarespace.com/universal/styles-compressed/products-collection-list-v2-8ec841cacfb75d4282f4-min.en-US.css","js":"//assets.squarespace.com/universal/scripts-compressed/products-collection-list-v2-91090125416a47e4fecb-min.en-US.js"},"squarespace-search-page":{"css":"//assets.squarespace.com/universal/styles-compressed/search-page-917382e71b023cec7555-min.en-US.css","js":"//assets.squarespace.com/universal/scripts-compressed/search-page-9f4098985bf13af25db5-min.en-US.js"},"squarespace-search-preview":{"js":"//assets.squarespace.com/universal/scripts-compressed/search-preview-4e7434a694d83d8766a0-min.en-US.js"},"squarespace-simple-liking":{"css":"//assets.squarespace.com/universal/styles-compressed/simple-liking-4279cc7bb78333b8db43-min.en-US.css","js":"//assets.squarespace.com/universal/scripts-compressed/simple-liking-f5b368f59d68ab9f9480-min.en-US.js"},"squarespace-social-buttons":{"css":"//assets.squarespace.com/universal/styles-compressed/social-buttons-3a7d186e7e5e3b30911b-min.en-US.css","js":"//assets.squarespace.com/universal/scripts-compressed/social-buttons-b71ef5af6c65212fb342-min.en-US.js"},"squarespace-tourdates":{"css":"//assets.squarespace.com/universal/styles-compressed/tourdates-8ec841cacfb75d4282f4-min.en-US.css","js":"//assets.squarespace.com/universal/scripts-compressed/tourdates-22e5cff21f07efe64af0-min.en-US.js"},"squarespace-website-overlays-manager":{"css":"//assets.squarespace.com/universal/styles-compressed/website-overlays-manager-efd3c12d460f58781eb3-min.en-US.css","js":"//assets.squarespace.com/universal/scripts-compressed/website-overlays-manager-db7ec709521a62f0b755-min.en-US.js"}},"pageType":2,"website":{"id":"52e89bfae4b06b90fc8aa357","identifier":"steve-barsh","websiteType":1,"contentModifiedOn":1707751118394,"cloneable":false,"hasBeenCloneable":false,"siteStatus":{},"language":"en-US","timeZone":"America/New_York","machineTimeZoneOffset":-18000000,"timeZoneOffset":-18000000,"timeZoneAbbr":"EST","siteTitle":"The Stop ALD Foundation","fullSiteTitle":"Diagnosing ALD \u2014 The Stop ALD Foundation","siteTagLine":"Adrenoleukodystrophy (ALD) therapy development, awareness, & prevention.","siteDescription":"<p>Adrenoleukodystrophy, or ALD, is a deadly genetic disease that affects 1 in 18 000 people. It most severely affects boys and men. This brain disorder destroys myelin, the protective sheath that surrounds the brain's neurons -- the nerve cells that allow us to think and to control our muscles. It knows no racial, ethnic or geographic barriers.</p><p>The most devastating form of ALD appears in childhood, generally between the ages of four and ten<span> </span>years old. Normal, healthy boys suddenly begin to regress. At first, they simply show behavioral problems, such as withdrawal or difficulty concentrating. Gradually, as the disease ravages their brain, their symptoms grow worse, including blindness and deafness, seizures, loss of muscle control, and progressive dementia. This relentless downward spiral leads to either death or permanent disability, usually within 2 to 5 years from diagnosis.</p><p>Today, new scientific knowledge offers hope for the successful treatment and prevention of ALD. But it is urgent that we invest in research that will advance new therapies, as well as new tools for early diagnosis and educational campaigns that will raise awareness so that children with ALD can be identified as early as possible, while there is the best hope of  a beneficial treatment.</p><p>Advancing such research is the goal of the Stop ALD Foundation. Like a venture capital firm, we identify gaps in the development process, seek out creative solutions to fill those gaps, and deliver the resources that can develop these great ideas into concrete projects, and projects into therapies that can transform the lives of children with ALD and their families.</p>","location":{"mapZoom":10.0,"mapLat":29.7530301,"mapLng":-95.37358970000003,"markerLat":29.7530301,"markerLng":-95.37358970000003,"addressTitle":"The Stop ALD Foundation","addressLine1":" Suite 2000","addressLine2":"Houston, TX 77002","addressCountry":"USA"},"logoImageId":"532f4cf3e4b05724b5060fec","shareButtonOptions":{"7":true,"6":true,"4":true,"3":true,"8":true},"logoImageUrl":"//images.squarespace-cdn.com/content/v1/52e89bfae4b06b90fc8aa357/1395608857481-B450M7Q6MBY0IP5B98EW/TheSTOP++ALD+Foundation+Logo.jpg","authenticUrl":"http://www.stopald.org","internalUrl":"http://steve-barsh.squarespace.com","baseUrl":"http://www.stopald.org","primaryDomain":"www.stopald.org","sslSetting":1,"isHstsEnabled":false,"socialAccounts":[{"serviceId":2,"userId":"720900776","userName":"sbarsh","screenname":"Stop ALD Foundation","addedOn":1391145186241,"profileUrl":"http://www.facebook.com/stopald","iconUrl":"http://graph.facebook.com/720900776/picture?type=square","metaData":{"service":"facebook"},"iconEnabled":true,"serviceName":"facebook"},{"serviceId":4,"userId":"20335840","userName":"StopALD","screenname":"Amber Salzman","addedOn":1391145221084,"profileUrl":"https://twitter.com/StopALD","iconUrl":"http://pbs.twimg.com/profile_images/76351713/Amber_Salzman_Photo_Headshot_April_2008_normal.jpg","collectionId":"52eb3105e4b0cdec90a44de7","iconEnabled":true,"serviceName":"twitter"}],"typekitId":"","statsMigrated":false,"imageMetadataProcessingEnabled":false,"screenshotId":"163ab6e6ba8602daa8e32840b233867f01b97b0ad137f7be9e61218a00d3294a","showOwnerLogin":false},"websiteSettings":{"id":"52e89bfae4b06b90fc8aa358","websiteId":"52e89bfae4b06b90fc8aa357","type":"Non-Profit","subjects":[{"systemSubject":"health"}],"country":"US","state":"TX","simpleLikingEnabled":true,"mobileInfoBarSettings":{"isContactEmailEnabled":false,"isContactPhoneNumberEnabled":false,"isLocationEnabled":false,"isBusinessHoursEnabled":false},"commentLikesAllowed":true,"commentAnonAllowed":true,"commentThreaded":true,"commentApprovalRequired":false,"commentAvatarsOn":true,"commentSortType":2,"commentFlagThreshold":0,"commentFlagsAllowed":true,"commentEnableByDefault":true,"commentDisableAfterDaysDefault":0,"disqusShortname":"","commentsEnabled":true,"contactPhoneNumber":"+1.713.756.3232","businessHours":{"monday":{"text":"","ranges":[{}]},"tuesday":{"text":"","ranges":[{}]},"wednesday":{"text":"","ranges":[{}]},"thursday":{"text":"","ranges":[{}]},"friday":{"text":"","ranges":[{}]},"saturday":{"text":"","ranges":[{}]},"sunday":{"text":"","ranges":[{}]}},"storeSettings":{"returnPolicy":"","termsOfService":"","privacyPolicy":"","expressCheckout":false,"continueShoppingLinkUrl":"/","useLightCart":false,"showNoteField":false,"shippingCountryDefaultValue":"US","billToShippingDefaultValue":false,"showShippingPhoneNumber":true,"isShippingPhoneRequired":false,"showBillingPhoneNumber":false,"isBillingPhoneRequired":false,"currenciesSupported":["USD"],"defaultCurrency":"USD","selectedCurrency":"USD","measurementStandard":1,"orderConfirmationInjectCode":"","showCustomCheckoutForm":false,"checkoutPageMarketingOptInEnabled":false,"enableMailingListOptInByDefault":false,"sameAsRetailLocation":false,"merchandisingSettings":{"scarcityEnabledOnProductItems":false,"scarcityEnabledOnProductBlocks":false,"scarcityMessageType":"DEFAULT_SCARCITY_MESSAGE","scarcityThreshold":10,"multipleQuantityAllowedForServices":true,"restockNotificationsEnabled":false,"restockNotificationsSuccessText":"","restockNotificationsMailingListSignUpEnabled":false,"relatedProductsEnabled":false,"relatedProductsOrdering":"random","soldOutVariantsDropdownDisabled":false,"productComposerOptedIn":false,"productComposerABTestOptedOut":false,"productReviewsEnabled":false,"displayImportedProductReviewsEnabled":false,"hasOptedToCollectNativeReviews":false},"minimumOrderSubtotalEnabled":false,"isLive":true,"multipleQuantityAllowedForServices":true},"useEscapeKeyToLogin":true,"ssBadgeType":1,"ssBadgePosition":4,"ssBadgeVisibility":1,"ssBadgeDevices":1,"pinterestOverlayOptions":{"mode":"disabled"},"ampEnabled":false,"userAccountsSettings":{"loginAllowed":false,"signupAllowed":false}},"cookieSettings":{"isCookieBannerEnabled":false,"isRestrictiveCookiePolicyEnabled":false,"cookieBannerText":"","cookieBannerTheme":"","cookieBannerVariant":"","cookieBannerPosition":"","cookieBannerCtaVariant":"","cookieBannerCtaText":"","cookieBannerAcceptType":"OPT_IN","cookieBannerOptOutCtaText":"","cookieBannerHasOptOut":false,"cookieBannerHasManageCookies":true,"cookieBannerManageCookiesLabel":"","cookieBannerSavedPreferencesText":"","cookieBannerSavedPreferencesLayout":"PILL"},"websiteCloneable":false,"collection":{"title":"Diagnosing ALD","id":"52eb338be4b06f07f8bb2074","fullUrl":"/diagnosis","type":10,"permissionType":1},"subscribed":false,"appDomain":"squarespace.com","templateTweakable":true,"tweakJSON":{"outerPadding":"100px","pagePadding":"80px","product-gallery-auto-crop":"true","product-image-auto-crop":"true","topPadding":"80px","tweak-v1-related-products-title-spacing":"50px"},"templateId":"50521cf884aeb45fa5cfdb80","templateVersion":"7","pageFeatures":[1,2,4],"gmRenderKey":"QUl6YVN5Q0JUUk9xNkx1dkZfSUUxcjQ2LVQ0QWVUU1YtMGQ3bXk4","templateScriptsRootUrl":"https://static1.squarespace.com/static/ta/5052176b84aeb45fa5cfcc83/960/scripts/","impersonatedSession":false,"tzData":{"zones":[[-300,"US","E%sT",null]],"rules":{"US":[[1967,2006,null,"Oct","lastSun","2:00","0","S"],[1987,2006,null,"Apr","Sun>=1","2:00","1:00","D"],[2007,"max",null,"Mar","Sun>=8","2:00","1:00","D"],[2007,"max",null,"Nov","Sun>=1","2:00","0","S"]]}},"showAnnouncementBar":false,"recaptchaEnterpriseContext":{"recaptchaEnterpriseSiteKey":"6LdDFQwjAAAAAPigEvvPgEVbb7QBm-TkVJdDTlAv"},"i18nContext":{"timeZoneData":{"id":"America/New_York","name":"Eastern Time"}},"env":"PRODUCTION"};</script><script type="module">Squarespace.load(window);</script> <script data-sqs-type="imageloader-bootstrapper" type="module">if(window.ImageLoader) window.ImageLoader.bootstrap({}, document);</script> <script type="module">Squarespace.afterBodyLoad(Y);</script> <script type="application/ld+json">{"url":"http://www.stopald.org","name":"The Stop ALD Foundation","description":"<p>Adrenoleukodystrophy, or ALD, is a deadly genetic disease that affects 1 in 18 000 people. It most severely affects boys and men. This brain disorder destroys myelin, the protective sheath that surrounds the brain's neurons -- the nerve cells that allow us to think and to control our muscles. It knows no racial, ethnic or geographic barriers.</p><p>The most devastating form of ALD appears in childhood, generally between the ages of four and ten<span> </span>years old. Normal, healthy boys suddenly begin to regress. At first, they simply show behavioral problems, such as withdrawal or difficulty concentrating. Gradually, as the disease ravages their brain, their symptoms grow worse, including blindness and deafness, seizures, loss of muscle control, and progressive dementia. This relentless downward spiral leads to either death or permanent disability, usually within 2 to 5 years from diagnosis.</p><p>Today, new scientific knowledge offers hope for the successful treatment and prevention of ALD. But it is urgent that we invest in research that will advance new therapies, as well as new tools for early diagnosis and educational campaigns that will raise awareness so that children with ALD can be identified as early as possible, while there is the best hope of  a beneficial treatment.</p><p>Advancing such research is the goal of the Stop ALD Foundation. Like a venture capital firm, we identify gaps in the development process, seek out creative solutions to fill those gaps, and deliver the resources that can develop these great ideas into concrete projects, and projects into therapies that can transform the lives of children with ALD and their families.</p>","image":"//images.squarespace-cdn.com/content/v1/52e89bfae4b06b90fc8aa357/1395608857481-B450M7Q6MBY0IP5B98EW/TheSTOP++ALD+Foundation+Logo.jpg","@context":"http://schema.org","@type":"WebSite"}</script><script type="application/ld+json">{"legalName":"The Stop ALD Foundation","address":" Suite 2000\nHouston, TX 77002\nUSA","email":"info@stopald.org","telephone":"+1.713.756.3232","sameAs":["http://www.facebook.com/stopald","https://twitter.com/StopALD"],"@context":"http://schema.org","@type":"Organization"}</script><script type="application/ld+json">{"address":" Suite 2000\nHouston, TX 77002\nUSA","image":"https://static1.squarespace.com/static/52e89bfae4b06b90fc8aa357/t/532f4cf3e4b05724b5060fec/1707751118394/","name":"The Stop ALD Foundation","openingHours":", , , , , , ","@context":"http://schema.org","@type":"LocalBusiness"}</script><link rel="stylesheet" type="text/css" href="https://static1.squarespace.com/static/sitecss/52e89bfae4b06b90fc8aa357/57/50521cf884aeb45fa5cfdb80/532f518ae4b0ed181e248c1a/960/site.css"/><script>Static.COOKIE_BANNER_CAPABLE = true;</script>  <script defer="defer" src="https://static1.squarespace.com/static/ta/5052176b84aeb45fa5cfcc83/960/scripts/site-bundle.js" type="text/javascript"></script> </head> <body class="page-borders-thick canvas-style-masthead-logo-right stack-navigation header-subtitle-none banner-alignment-center blog-layout-center project-layout-left-sidebar thumbnails-on-open-page-show-all social-icon-style-round hide-article-author event-thumbnails event-thumbnail-size-32-standard event-date-label event-date-label-time event-list-show-cats event-list-date event-list-time event-list-address event-icalgcal-links event-excerpts event-item-back-link product-list-titles-under product-list-alignment-center product-item-size-32-standard product-image-auto-crop product-gallery-size-11-square product-gallery-auto-crop show-product-price show-product-item-nav product-social-sharing tweak-v1-related-products-image-aspect-ratio-11-square tweak-v1-related-products-details-alignment-center newsletter-style-dark opentable-style-light small-button-style-solid small-button-shape-square medium-button-style-solid medium-button-shape-square large-button-style-solid large-button-shape-square image-block-poster-text-alignment-center image-block-card-dynamic-font-sizing image-block-card-content-position-center image-block-card-text-alignment-left image-block-overlap-dynamic-font-sizing image-block-overlap-content-position-center image-block-overlap-text-alignment-left image-block-collage-dynamic-font-sizing image-block-collage-content-position-top image-block-collage-text-alignment-left image-block-stack-dynamic-font-sizing image-block-stack-text-alignment-left button-style-solid button-corner-style-pill tweak-product-quick-view-button-style-floating tweak-product-quick-view-button-position-bottom tweak-product-quick-view-lightbox-excerpt-display-truncate tweak-product-quick-view-lightbox-show-arrows tweak-product-quick-view-lightbox-show-close-button tweak-product-quick-view-lightbox-controls-weight-light native-currency-code-usd collection-type-page collection-layout-default collection-52eb338be4b06f07f8bb2074 mobile-style-available logo-image" id="collection-52eb338be4b06f07f8bb2074"> <div id="canvas"> <div id="mobileNav" class=""> <div class="wrapper"> <nav class="main-nav mobileNav"><ul> <li class="page-collection"> <a href="/">Home</a> </li> <li class="page-collection"> <a href="/what-is-ald">What is ALD?</a> </li> <li class="page-collection active-link"> <a href="/diagnosis">Diagnosing ALD</a> </li> <li class="page-collection"> <a href="/treating-ald">Treating ALD</a> </li> <li class="page-collection"> <a href="/current-treatment-research">Research & Clinical Trials</a> </li> <li class="page-collection"> <a href="/frequenly-asked-questions-faqs">FAQ's</a> </li> <li class="blog-collection"> <a href="/news-1">News</a> </li> <li class="page-collection"> <a href="/other-resources">Resources</a> </li> <li class="folder-collection folder"> <input type="checkbox" name="mobile-folder-toggle-532fae5be4b063a5e108179c" id="mobile-folder-toggle-532fae5be4b063a5e108179c" class="folder-toggle-box hidden" /> <label for="mobile-folder-toggle-532fae5be4b063a5e108179c" class="folder-toggle-label" onclick data-href="/about">About</label>  <div class="subnav"> <ul> <li class="page-collection"> <a href="/our-beginning">Our Beginning</a> </li> <li class="page-collection"> <a href="/mission">Mission</a> </li> <li class="page-collection"> <a href="/advisory-board">Advisory Board</a> </li> <li class="page-collection"> <a href="/team">Team</a> </li> </ul> </div> </li> <li class="page-collection"> <a href="/contact">Contact Us</a> </li> <li class="page-collection"> <a href="/make-a-donation">Donate Now!</a> </li> </ul> </nav> </div> </div> <div id="mobileMenuLink"><a>Menu</a></div> <header id="header" class="clear"> <div id="upper-logo"> <h1 class="logo" data-content-field="site-title"> <a href="/"><img src="//images.squarespace-cdn.com/content/v1/52e89bfae4b06b90fc8aa357/1395608857481-B450M7Q6MBY0IP5B98EW/TheSTOP++ALD+Foundation+Logo.jpg?format=1500w" alt="The Stop ALD Foundation" /></a> </h1> </div> <script type="module"> if (parseInt(Y.one('body').getComputedStyle('width'),10) <= 640) { Y.use('squarespace-ui-base', function(Y) { Y.one("#upper-logo .logo").plug(Y.Squarespace.TextShrink, { parentEl: Y.one('#upper-logo') }); }); } </script> <div class="site-info" data-content-field="business-information"> <div class="site-address"> Suite 2000</div> <div class="site-city-state">Houston, TX 77002</div> <div class="site-phone">+1.713.756.3232</div> </div> <div class="site-tag-line"> <span>Adrenoleukodystrophy (ALD) therapy development, awareness, & prevention.</span> </div> <div class="custom-info"> <div class="sqs-layout sqs-grid-12 columns-12" data-layout-label="Header Subtitle: Custom Content" data-type="block-field" data-updated-on="1381761023501" id="customInfoBlock"><div class="row sqs-row"><div class="col sqs-col-12 span-12"><div class="sqs-block html-block sqs-block-html" data-block-type="2" id="block-81eee4bbda3d9efd0834"><div class="sqs-block-content"> <div class="sqs-html-content"> <p class="text-align-center">Your Custom Text Here</p> </div> </div></div></div></div></div> </div> <div id="lower-logo"> <h1 class="logo" data-content-field="site-title"><a href="/"><img src="//images.squarespace-cdn.com/content/v1/52e89bfae4b06b90fc8aa357/1395608857481-B450M7Q6MBY0IP5B98EW/TheSTOP++ALD+Foundation+Logo.jpg?format=1500w" alt="The Stop ALD Foundation" /></a></h1> </div> <script type="module"> Y.use('squarespace-ui-base', function(Y) { Y.one("#lower-logo .logo").plug(Y.Squarespace.TextShrink, { parentEl: Y.one('#lower-logo') }); }); </script> <div id="topNav"> <nav class="main-nav" data-content-field="navigation"> <ul> <li class="page-collection"> <a href="/">Home</a> </li> <li class="page-collection"> <a href="/what-is-ald">What is ALD?</a> </li> <li class="page-collection active-link"> <a href="/diagnosis">Diagnosing ALD</a> </li> <li class="page-collection"> <a href="/treating-ald">Treating ALD</a> </li> <li class="page-collection"> <a href="/current-treatment-research">Research & Clinical Trials</a> </li> <li class="page-collection"> <a href="/frequenly-asked-questions-faqs">FAQ's</a> </li> <li class="blog-collection"> <a href="/news-1">News</a> </li> <li class="page-collection"> <a href="/other-resources">Resources</a> </li> <li class="folder-collection folder"> <a aria-haspopup="true" href="#" onClick="return false;">About</a> <div class="subnav"> <ul> <li class="page-collection"> <a href="/our-beginning">Our Beginning</a> </li> <li class="page-collection"> <a href="/mission">Mission</a> </li> <li class="page-collection"> <a href="/advisory-board">Advisory Board</a> </li> <li class="page-collection"> <a href="/team">Team</a> </li> </ul> </div> </li> <li class="page-collection"> <a href="/contact">Contact Us</a> </li> <li class="page-collection"> <a href="/make-a-donation">Donate Now!</a> </li> </ul> <div class="page-divider"></div> </nav> </div> </header> <div class="page-divider top-divider"></div>  <section id="page" class="clear" role="main" data-content-field="main-content" data-collection-id="52eb338be4b06f07f8bb2074" data-collection-id="52eb338be4b06f07f8bb2074" data-edit-main-image="Banner" >  <div class="sqs-layout sqs-grid-12 columns-12" data-type="page" data-updated-on="1707751118380" id="page-52eb338be4b06f07f8bb2074"><div class="row sqs-row"><div class="col sqs-col-12 span-12"><div class="sqs-block html-block sqs-block-html" data-block-type="2" id="block-750b90fae966233ebf3a"><div class="sqs-block-content"> <div class="sqs-html-content"> <h1 style="white-space:pre-wrap;">Diagnosing ALD</h1><p class="" style="white-space:pre-wrap;">It is essential to diagnose ALD as early as possible. All the evidence indicates that the two currently available treatments for the disease -- Lorenzo's oil and stem cell transplantation -- only work during a very narrow window either before symptoms develop, or very early after their onset. Once the disease has progressed and symptoms have become severe, there are currently no treatments that can replace the lost myelin and the only treatments available are palliative. <br><br>Unfortunately, cases of ALD are often missed or misdiagnosed during the critical period of early onset. This is often because diagnosing ALD can be a tremendous challenge for many physicians. The earliest symptoms of the disorder in childhood can easily be mistaken for a number of other, much milder and much more common developmental and behavioral problems, such as attention deficit disorder (ADD/ADHD) or learning disabilities.</p><h1 style="white-space:pre-wrap;"><strong>What Should Parents and Families Look For?</strong></h1><p class="" style="white-space:pre-wrap;">It is very difficult to differentiate ALD from other conditions, such as ADHD, epilepsy, autism, and other learning disabilities, particularly if you are not aware that a genetic predisposition to the disease runs in your family. However, if you notice some of the following things, be sure that your child's physician is considering the possibility of ALD -- especially if you have a family history of neurological problems:</p><ul data-rte-list="default"><li><p class="" style="white-space:pre-wrap;"><strong><em>Late-onset ADHD or other attention problems.</em></strong><br>A child with ADHD usually shows attention problems in preschool or early school years, while ALD symptoms appear between ages six and 10. If your son had no trouble paying attention in kindergarten but is suddenly developing problems in second grade, mention this to your doctor.</p></li><li><p class="" style="white-space:pre-wrap;"><strong><em>Lack of response to medications for ADHD.</em></strong><br>If your child has been receiving a stimulant medication for ADHD and has not responded, your doctor will probably suggest a change of dose or change of medication. Ask for a blood test for ALD and a brain MRI at the same time.</p></li><li><p class="" style="white-space:pre-wrap;"><strong><em>Adrenal insufficiency.</em></strong><br>If your doctor diagnoses your child with Addison's disease, a test for ALD should be automatic, since ALD is the most common reason for Addison's disease in childhood.</p></li><li><p class="" style="white-space:pre-wrap;"><strong><em>Problems with vision.</em></strong><br>Visual impairment, caused by lesions on the optic tract, is characteristic of early seen ALD, and is frequently misdiagnosed.</p></li></ul><h1 style="white-space:pre-wrap;">Diagnosis through newborn screening</h1><p class="" style="white-space:pre-wrap;">If you receive an ALD diagnosis via newborn screening, please watch this video.</p> </div> </div></div><div class="sqs-block video-block sqs-block-video" data-block-json="{"blockAnimation":"none","layout":"caption-below","overlay":false,"description":{"html":"Meet the University of Minnesota Masonic Children's Hospital genetics counselor Katie Wiens and learn what having a child identified through newborn screening for ALD (or adrenoleukodystrophy) means for your entire family."},"hSize":null,"floatDir":null,"isOldBlock":true,"html":"<iframe src=\"//www.youtube.com/embed/j3ebFfOqO98?wmode=opaque&amp;enablejsapi=1\" height=\"480\" width=\"854\" scrolling=\"no\" frameborder=\"0\" allowfullscreen=\"\">\n</iframe>","url":"https://youtu.be/j3ebFfOqO98","width":854,"height":480,"providerName":"YouTube","thumbnailUrl":"https://i.ytimg.com/vi/j3ebFfOqO98/hqdefault.jpg","resolvedBy":"youtube"}" data-block-type="32" id="block-yui_3_17_2_1_1524967253744_15458"><div class="sqs-block-content"><div class="intrinsic" style="max-width:100%"><div class="embed-block-wrapper " style="padding-bottom:56.20609%;"><div class="sqs-video-wrapper" data-provider-name="YouTube" data-html="<iframe src="//www.youtube.com/embed/j3ebFfOqO98?wmode=opaque&enablejsapi=1" height="480" width="854" scrolling="no" frameborder="0" allowfullscreen=""><br/></iframe>"></div></div><div class="video-caption-wrapper"><div class="video-caption">Meet the University of Minnesota Masonic Children's Hospital genetics counselor Katie Wiens and learn what having a child identified through newborn screening for ALD (or adrenoleukodystrophy) means for your entire family.</div></div></div></div></div><div class="sqs-block html-block sqs-block-html" data-block-type="2" id="block-yui_3_17_2_1_1524967253744_16816"><div class="sqs-block-content"> <div class="sqs-html-content"> <h2 style="white-space:pre-wrap;">Most US states now test all newborn children for ALD.</h2> </div> </div></div><div class="sqs-block image-block sqs-block-image" data-aspect-ratio="61.303191489361694" data-block-type="5" id="block-yui_3_17_2_1_1524967253744_8395"><div class="sqs-block-content"> <div class=" image-block-outer-wrapper layout-caption-below design-layout-inline combination-animation-none individual-animation-none individual-text-animation-none " data-test="image-block-inline-outer-wrapper" > <figure class=" sqs-block-image-figure intrinsic " style="max-width:1100px;" > <div class="image-block-wrapper" data-animation-role="image" > <div class="sqs-image-shape-container-element has-aspect-ratio " style=" position: relative; padding-bottom:61.303192138671875%; overflow: hidden;-webkit-mask-image: -webkit-radial-gradient(white, black); " > <img data-stretch="false" data-src="https://images.squarespace-cdn.com/content/v1/52e89bfae4b06b90fc8aa357/19d425be-dee2-4eb2-8e60-97ea4c5085ae/ald-map-2024_orig.jpg" data-image="https://images.squarespace-cdn.com/content/v1/52e89bfae4b06b90fc8aa357/19d425be-dee2-4eb2-8e60-97ea4c5085ae/ald-map-2024_orig.jpg" data-image-dimensions="1100x654" data-image-focal-point="0.5,0.5" alt="" data-load="false" elementtiming="system-image-block" src="https://images.squarespace-cdn.com/content/v1/52e89bfae4b06b90fc8aa357/19d425be-dee2-4eb2-8e60-97ea4c5085ae/ald-map-2024_orig.jpg" width="1100" height="654" alt="" sizes="(max-width: 640px) 100vw, (max-width: 767px) 100vw, 100vw" style="display:block;object-fit: cover; width: 100%; height: 100%; object-position: 50% 50%" onload="this.classList.add("loaded")" srcset="https://images.squarespace-cdn.com/content/v1/52e89bfae4b06b90fc8aa357/19d425be-dee2-4eb2-8e60-97ea4c5085ae/ald-map-2024_orig.jpg?format=100w 100w, https://images.squarespace-cdn.com/content/v1/52e89bfae4b06b90fc8aa357/19d425be-dee2-4eb2-8e60-97ea4c5085ae/ald-map-2024_orig.jpg?format=300w 300w, https://images.squarespace-cdn.com/content/v1/52e89bfae4b06b90fc8aa357/19d425be-dee2-4eb2-8e60-97ea4c5085ae/ald-map-2024_orig.jpg?format=500w 500w, https://images.squarespace-cdn.com/content/v1/52e89bfae4b06b90fc8aa357/19d425be-dee2-4eb2-8e60-97ea4c5085ae/ald-map-2024_orig.jpg?format=750w 750w, https://images.squarespace-cdn.com/content/v1/52e89bfae4b06b90fc8aa357/19d425be-dee2-4eb2-8e60-97ea4c5085ae/ald-map-2024_orig.jpg?format=1000w 1000w, https://images.squarespace-cdn.com/content/v1/52e89bfae4b06b90fc8aa357/19d425be-dee2-4eb2-8e60-97ea4c5085ae/ald-map-2024_orig.jpg?format=1500w 1500w, https://images.squarespace-cdn.com/content/v1/52e89bfae4b06b90fc8aa357/19d425be-dee2-4eb2-8e60-97ea4c5085ae/ald-map-2024_orig.jpg?format=2500w 2500w" loading="lazy" decoding="async" data-loader="sqs"> </div> </div> <figcaption class="image-caption-wrapper"> <div class="image-caption"><p class="" style="white-space:pre-wrap;">Image courtesy of the <a href="https://www.aldalliance.org/newborn-screening.html" target="_blank">ALD Alliance</a></p></div> </figcaption> </figure> </div> </div></div><div class="sqs-block html-block sqs-block-html" data-block-type="2" id="block-yui_3_17_2_1_1524967253744_8664"><div class="sqs-block-content"> <div class="sqs-html-content"> <h1 style="white-space:pre-wrap;"><strong>What Should Physicians Look For?</strong></h1><p class="" style="white-space:pre-wrap;">Some key clues that should alert physicians to consider the possibility of ALD include:</p><ul data-rte-list="default"><li><p class="" style="white-space:pre-wrap;">A family history of significant medical conditions, early morbidity, or symptoms of behavioral or developmental disorders that appear to be genetic;</p></li><li><p class="" style="white-space:pre-wrap;">Signs of abnormal development in the child;</p></li><li><p class="" style="white-space:pre-wrap;">Changes in the child's functioning, such as declines in cognition, learning, behavior, or emotional regulation;</p></li><li><p class="" style="white-space:pre-wrap;">Rapid acceleration of such changes;</p></li><li><p class="" style="white-space:pre-wrap;">Late onset of symptoms that typically occur earlier in childhood, such as attention or learning problems;</p></li><li><p class="" style="white-space:pre-wrap;">Visual-spatial or visual-perceptual difficulties; and</p></li><li><p class="" style="white-space:pre-wrap;">Lack of sustained response to symptomatic therapies.<br><br><strong>Physicians may consider referring to the following table when ALD is included as a differential diagnosis:</strong></p></li></ul> </div> </div></div><div class="sqs-block image-block sqs-block-image" data-block-type="5" id="block-59007399c0e50540441a"><div class="sqs-block-content"> <div class=" image-block-outer-wrapper layout-caption-hidden design-layout-inline combination-animation-none individual-animation-none individual-text-animation-none " data-test="image-block-inline-outer-wrapper" > <figure class=" sqs-block-image-figure intrinsic " style="max-width:745px;" > <div class="image-block-wrapper" data-animation-role="image" > <div class="sqs-image-shape-container-element has-aspect-ratio " style=" position: relative; padding-bottom:46.04026794433594%; overflow: hidden;-webkit-mask-image: -webkit-radial-gradient(white, black); " > <img data-stretch="false" data-src="https://images.squarespace-cdn.com/content/v1/52e89bfae4b06b90fc8aa357/1395630211358-NKJGSDJ6NNAUTLLOQNED/differential+diagnosis" data-image="https://images.squarespace-cdn.com/content/v1/52e89bfae4b06b90fc8aa357/1395630211358-NKJGSDJ6NNAUTLLOQNED/differential+diagnosis" data-image-dimensions="745x343" data-image-focal-point="0.5,0.5" alt="Physicians may consider referring to the following table when ALD is included as a differential diagnosis" data-load="false" elementtiming="system-image-block" src="https://images.squarespace-cdn.com/content/v1/52e89bfae4b06b90fc8aa357/1395630211358-NKJGSDJ6NNAUTLLOQNED/differential+diagnosis" width="745" height="343" alt="" sizes="(max-width: 640px) 100vw, (max-width: 767px) 100vw, 100vw" style="display:block;object-fit: cover; width: 100%; height: 100%; object-position: 50% 50%" onload="this.classList.add("loaded")" srcset="https://images.squarespace-cdn.com/content/v1/52e89bfae4b06b90fc8aa357/1395630211358-NKJGSDJ6NNAUTLLOQNED/differential+diagnosis?format=100w 100w, https://images.squarespace-cdn.com/content/v1/52e89bfae4b06b90fc8aa357/1395630211358-NKJGSDJ6NNAUTLLOQNED/differential+diagnosis?format=300w 300w, https://images.squarespace-cdn.com/content/v1/52e89bfae4b06b90fc8aa357/1395630211358-NKJGSDJ6NNAUTLLOQNED/differential+diagnosis?format=500w 500w, https://images.squarespace-cdn.com/content/v1/52e89bfae4b06b90fc8aa357/1395630211358-NKJGSDJ6NNAUTLLOQNED/differential+diagnosis?format=750w 750w, https://images.squarespace-cdn.com/content/v1/52e89bfae4b06b90fc8aa357/1395630211358-NKJGSDJ6NNAUTLLOQNED/differential+diagnosis?format=1000w 1000w, https://images.squarespace-cdn.com/content/v1/52e89bfae4b06b90fc8aa357/1395630211358-NKJGSDJ6NNAUTLLOQNED/differential+diagnosis?format=1500w 1500w, https://images.squarespace-cdn.com/content/v1/52e89bfae4b06b90fc8aa357/1395630211358-NKJGSDJ6NNAUTLLOQNED/differential+diagnosis?format=2500w 2500w" loading="lazy" decoding="async" data-loader="sqs"> </div> </div> </figure> </div> </div></div><div class="sqs-block html-block sqs-block-html" data-block-type="2" id="block-f27ab3fe7594197c8fb3"><div class="sqs-block-content"> <div class="sqs-html-content"> <h2 style="margin-left:40px;white-space:pre-wrap;"><strong>MediView Report!</strong></h2><p style="margin-left:40px;white-space:pre-wrap;" class="">Read the MediView Report, <a href="/s/MediView-Report-on-ALD-2004-FINAL.pdf"><em>Avoiding the Misdiagnosis of Adrenoleukodystrophy: Distinguishing ALD from ADD/ADHD</em></a>.</p><h1 style="white-space:pre-wrap;"><strong>Diagnostic Testing</strong></h1><p class="" style="white-space:pre-wrap;">Once ALD is suspected, there are two tests that must be done: a blood test and a brain scan. The blood test analyzes the amount of very long chain fatty acids, which are elevated in ALD. This test has the highest degree of accuracy in males; however, it can sometimes miss the presence of the mutated gene in women who are carriers of the disease.</p><p class="" style="white-space:pre-wrap;">If the blood test suggests ALD, a magnetic resonance imaging scan (MRI) will be performed to determine if the disease has begun to do damage to the brain. Lesions on the brain caused by the destruction of the myelin will appear on MRI before any neurological or psychological symptoms appear. The MRI scan will produce something called a Loes score, which rates the severity of the damage to the brain on a scale from 0 to 34. A score of 0.5 or less is normal; a score of 14 or more indicates severe ALD.</p><h1 style="white-space:pre-wrap;"><strong>Genetic Testing</strong></h1><p class="" style="white-space:pre-wrap;">When a child is diagnosed with ALD, among the first questions many families ask are "Are our other children at risk?" or "Can we safely have more children?" Genetic testing is the only way to answer that question. DNA-based blood tests can accurately identify both women who are carriers of the gene, and boys and young men who have ALD and may not yet be showing symptoms.</p><p class="" style="white-space:pre-wrap;">Research shows that screening not just the parents and siblings of boys with ALD, but extended family members as well, is the best way to detect the disease at a time when treatment can be beneficial.</p><p class="" style="white-space:pre-wrap;">Although it is not currently feasible to screen all pregnant women for the ALD mutation, prenatal tests and genetic counseling are available to help families plan their pregnancies and avoid passing the ALD gene on to their children.</p><p class="" style="white-space:pre-wrap;">Amniocentesis and chorionic villus sampling (CVS) can both detect the ALD abnormality, but only if testing laboratory or physician is specifically looking for it.</p><p class="" style="white-space:pre-wrap;">Doctors can contact the <a href="http://genetics.kennedykrieger.org/" target="_blank">Kennedy Krieger Institute</a> to request genetic testing.</p> </div> </div></div></div></div></div> </section> <div class="sqs-layout sqs-grid-12 columns-12 empty" data-layout-label="Diagnosing ALD Footer Content" data-type="block-field" id="collection-52eb338be4b06f07f8bb2074"><div class="row sqs-row"><div class="col sqs-col-12 span-12"></div></div></div>  <div class="info-footer-wrapper clear"> <div class="info-footer"> <div class="sqs-layout sqs-grid-12 columns-12 empty" data-layout-label="Info Footer Content" data-type="block-field" data-updated-on="1395639618818" id="infoFooterBlock"><div class="row sqs-row"><div class="col sqs-col-12 span-12"></div></div></div> <div id="socialLinks" class="social-links sqs-svg-icon--list" data-content-field="connected-accounts"> <a href="http://www.facebook.com/stopald" target="_blank" class="sqs-svg-icon--wrapper facebook"> <div> <svg class="sqs-svg-icon--social" viewBox="0 0 64 64"> <use class="sqs-use--icon" xlink:href="#facebook-icon"></use> <use class="sqs-use--mask" xlink:href="#facebook-mask"></use> </svg> </div> </a> <a href="https://twitter.com/StopALD" target="_blank" class="sqs-svg-icon--wrapper twitter"> <div> <svg class="sqs-svg-icon--social" viewBox="0 0 64 64"> <use class="sqs-use--icon" xlink:href="#twitter-icon"></use> <use class="sqs-use--mask" xlink:href="#twitter-mask"></use> </svg> </div> </a> </div> </div> </div> <footer id="footer" class="clear"> <div class="sqs-layout sqs-grid-12 columns-12" data-layout-label="Footer Content" data-type="block-field" data-updated-on="1395639683170" id="footerBlock"><div class="row sqs-row"><div class="col sqs-col-12 span-12"><div class="sqs-block html-block sqs-block-html" data-block-type="2" id="block-7d9d7fddc71929b3cf64"><div class="sqs-block-content"> <div class="sqs-html-content"> <p>Copyright (c) 2004 - Present by The Stop ALD Foundation. All Rights Reserved.</p> </div> </div></div></div></div></div> </footer> </div> <div></div> <svg xmlns="http://www.w3.org/2000/svg" version="1.1" style="display:none" data-usage="social-icons-svg"><symbol id="facebook-icon" viewBox="0 0 64 64"><path d="M34.1,47V33.3h4.6l0.7-5.3h-5.3v-3.4c0-1.5,0.4-2.6,2.6-2.6l2.8,0v-4.8c-0.5-0.1-2.2-0.2-4.1-0.2 c-4.1,0-6.9,2.5-6.9,7V28H24v5.3h4.6V47H34.1z"/></symbol><symbol id="facebook-mask" viewBox="0 0 64 64"><path d="M0,0v64h64V0H0z M39.6,22l-2.8,0c-2.2,0-2.6,1.1-2.6,2.6V28h5.3l-0.7,5.3h-4.6V47h-5.5V33.3H24V28h4.6V24 c0-4.6,2.8-7,6.9-7c2,0,3.6,0.1,4.1,0.2V22z"/></symbol><symbol id="twitter-icon" viewBox="0 0 64 64"><path d="M48,22.1c-1.2,0.5-2.4,0.9-3.8,1c1.4-0.8,2.4-2.1,2.9-3.6c-1.3,0.8-2.7,1.3-4.2,1.6 C41.7,19.8,40,19,38.2,19c-3.6,0-6.6,2.9-6.6,6.6c0,0.5,0.1,1,0.2,1.5c-5.5-0.3-10.3-2.9-13.5-6.9c-0.6,1-0.9,2.1-0.9,3.3 c0,2.3,1.2,4.3,2.9,5.5c-1.1,0-2.1-0.3-3-0.8c0,0,0,0.1,0,0.1c0,3.2,2.3,5.8,5.3,6.4c-0.6,0.1-1.1,0.2-1.7,0.2c-0.4,0-0.8,0-1.2-0.1 c0.8,2.6,3.3,4.5,6.1,4.6c-2.2,1.8-5.1,2.8-8.2,2.8c-0.5,0-1.1,0-1.6-0.1c2.9,1.9,6.4,2.9,10.1,2.9c12.1,0,18.7-10,18.7-18.7 c0-0.3,0-0.6,0-0.8C46,24.5,47.1,23.4,48,22.1z"/></symbol><symbol id="twitter-mask" viewBox="0 0 64 64"><path d="M0,0v64h64V0H0z M44.7,25.5c0,0.3,0,0.6,0,0.8C44.7,35,38.1,45,26.1,45c-3.7,0-7.2-1.1-10.1-2.9 c0.5,0.1,1,0.1,1.6,0.1c3.1,0,5.9-1,8.2-2.8c-2.9-0.1-5.3-2-6.1-4.6c0.4,0.1,0.8,0.1,1.2,0.1c0.6,0,1.2-0.1,1.7-0.2 c-3-0.6-5.3-3.3-5.3-6.4c0,0,0-0.1,0-0.1c0.9,0.5,1.9,0.8,3,0.8c-1.8-1.2-2.9-3.2-2.9-5.5c0-1.2,0.3-2.3,0.9-3.3 c3.2,4,8.1,6.6,13.5,6.9c-0.1-0.5-0.2-1-0.2-1.5c0-3.6,2.9-6.6,6.6-6.6c1.9,0,3.6,0.8,4.8,2.1c1.5-0.3,2.9-0.8,4.2-1.6 c-0.5,1.5-1.5,2.8-2.9,3.6c1.3-0.2,2.6-0.5,3.8-1C47.1,23.4,46,24.5,44.7,25.5z"/></symbol></svg> </body> </html>

CINXE.COM

Diagnosing ALD — The Stop ALD Foundation