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</a> </div> </div> </li> </ul></div></nav></div></div> <div class="astra-advanced-hook-2017 "> <a href="/donate/"><button> Donate </button></a> </div> </div> </div> </div>  </div>  </header> <div class="ast-title-bar-wrap ast-advanced-headers-vertical-center" aria-label=""><div class="ast-inside-advanced-header-content"> <div class="ast-advanced-headers-layout ast-advanced-headers-layout-2" > <div class="ast-container ast-title-bar-align-center"> <div class="ast-advanced-headers-wrap"> <h1 class="ast-advanced-headers-title"> FAQs </h1> </div> </div> </div> </div> </div> <div id="content" class="site-content"> <div class="ast-container"> <div id="primary" class="content-area primary"> <main id="main" class="site-main"> <article class="post-1025 page type-page status-publish has-post-thumbnail ast-article-single" id="post-1025" itemtype="https://schema.org/CreativeWork" itemscope="itemscope"> <header class="entry-header ast-header-without-markup"> </header> <div class="entry-content clear" itemprop="text" > <h2 class="wp-block-heading">Frequently Asked Questions</h2> <h4 class="wp-block-heading">Is there a cure? What treatments are available? </h4> <p>While leukodystrophy does not have a cure (yet!) there are treatments available. The type of leukodystrophy diagnosed will dictate what treatment options to pursue. Some leukodystrophies only have supportive treatments – which are meant to relieve symptoms. Supportive treatments do not halt or slow the progress of the disease. You will need to consult a licensed medical professional who has access to your complete medical history to discuss your treatment plan. </p> <h4 class="wp-block-heading">I have a relative that was diagnosed with leukodystrophy. Do I have leukodystrophy too? </h4> <p>We advocate for families to speak with genetic counselors to determine whether testing is appropriate for family members, based on the type of leukodystrophy that is diagnosed. In some cases, only certain family members would need to be tested and a genetic counselor would be able to answer those questions. </p> <p>Your primary care physician should be able to provide a referral to a genetic counselor in your area or email <a href="/cdn-cgi/l/email-protection" class="__cf_email__" data-cfemail="5b143d3d32383e1b0e171d7534293c">[email protected]</a>, if they can’t help. </p> <p>Invitae offers genetic testing to families from the United States, Canada, and Australia, who are at risk of leukodystrophy at no cost! Learn more here: <a href="https://www.invitae.com/en/leukodystrophies/" target="_blank" rel="noreferrer noopener">https://www.invitae.com/en/leukodystrophies/</a></p> <h4 class="wp-block-heading">Why isn’t there a cure yet? The leukodystrophies have been around for decades.</h4> <p>Researchers from all over the world are improving therapies to halt or at least slow the disease progression. Scientists need to study the disease for many years to determine exactly what is happening to a person’s body as they fight the disease. Understanding how the disease itself works is the only way to find an effective cure. The ULF stresses that even “failed” studies provide answers to the scientific community, because now the researchers are aware of dead ends and can focus on more promising avenues. Quality and length of life for leukodystrophy patients are slowly improving with each passing year, as research and treatments continues to advance. The ULF is dedicated to making sure that the projects funded by ULF grants are the most promising research.</p> <h4 class="wp-block-heading">What can I expect, as a patient or as a caregiver, in terms of symptoms or how quickly the disease will progress? </h4> <p>Each person with a leukodystrophy diagnosis will face very different obstacles. The first question is determining which type of leukodystrophy is being diagnosed. Each type has its own distinct characteristics in terms of symptoms, its onset, and speed of progression. The overall health of the affected individual must also be factored in. The patient’s primary care team is the best resource to consult with specific questions such as this – there are many factors to consider. </p> <h4 class="wp-block-heading">What does the ULF do? </h4> <p>We are a resource for families affected by leukodystrophy to help them find the assistance they need to better their quality of life, and we fund scientific research through our annual grant cycle program. <a href="/about/">Learn more.</a></p> <h4 class="wp-block-heading">Can I send you MRI or test results for a second opinion? </h4> <p>We ask that you do not send us any medically sensitive information. The ULF does not have any medical professionals on staff to review this information. Due to privacy restrictions, the ULF cannot pass along patient information to medical professionals. What we can do is help you find a physician to speak with, and you can send your information directly to them. </p> <h4 class="wp-block-heading">Are there leukodystrophy support groups that meet in my hometown or state? </h4> <p>The annual <a href="/news/2020-family-conference/">ULF Family Conference</a> is the next best thing to a support group. Other Patient Advocacy Organizations host conferences as well, which are included in the <a href="/news/calendar-of-events/">ULF Calendar of Events</a>. You could inquire with your local social service foundations in your area to see if there are any support groups that could be of interest to you. Hospitals or mental health facilities will occasionally host support groups for chronic illness or terminal disease patients. While these groups are not specific to leukodystrophy, they may give you the sense of community that you are looking for in your immediate area. If you have a Facebook profile, you could search for leukodystrophy groups to join, including general leukodystrophy and your specific type of diagnosis, if it is known. </p> <h4 class="wp-block-heading">I need financial assistance. Does the ULF have any financial relief programs? </h4> <p>Yes, the ULF Family Assistance Program, funded by the Hultman Family Endowment, offers financial support to those going through a significant loss in income, scholarships to help families in financial need to attend our annual Conference. <a href="https://ulf.org/news/2020-family-conference/">Find more information on the scholarship program</a> and then <a href="/resources/type-specific-resources/">check out our page</a> with other foundations or programs that may offer <a href="/resources/financial-assistance/">financial assistance</a>. </p> <p></p> <h4 class="wp-block-heading">Can I donate to a specific type of leukodystrophy research? </h4> <p>Yes! Every year, we take a look at how much has been donated to our general research fund and our specific type funds, and that guides our MSAB on how to award the funds. <a href="/research/research-grant-program/">Learn more about our grant cycle</a>. </p> </div> </article> </main> </div> <div class="widget-area secondary" id="secondary" itemtype="https://schema.org/WPSideBar" itemscope="itemscope"> <div class="sidebar-main" > <aside id="custom_html-8" class="widget_text widget widget_custom_html"><h2 class="widget-title">Support the ULF</h2><div class="textwidget custom-html-widget">Please consider a donation to support our mission.   <br>  <div class="wp-block-button aligncenter" style="padding:20px 0px 0px 0px ; border-radius:0px; "><a class="wp-block-button__link has-background" href="/donate/" style="background-color:#534588;border-radius:25px">Give Now</a></div>    </div></aside><aside id="custom_html-29" class="widget_text widget widget_custom_html"><h2 class="widget-title">Join Our E-mail List</h2><div class="textwidget custom-html-widget">Receive timely information in your inbox!   <br>  <div class="wp-block-button aligncenter" style="padding:20px 0px 0px 0px ; border-radius:0px; "><a class="wp-block-button__link has-background" href="/about-the-ulf/join-our-e-mail-list/" style="background-color:#ff671d;border-radius:25px">Sign Up!</a></div>    </div></aside> </div> </div> </div>  </div> <footer class="site-footer" id="colophon" itemtype="https://schema.org/WPFooter" itemscope="itemscope" itemid="#colophon" > <div class="footer-adv footer-adv-layout-4"> <div class="footer-adv-overlay"> <div class="ast-container"> <div class="ast-row"> <div class="ast-col-lg-3 ast-col-md-3 ast-col-sm-12 ast-col-xs-12 footer-adv-widget footer-adv-widget-1"> <div id="astra-widget-address-3" class="widget astra-widget-address"><h2 class="widget-title">Contact the ULF</h2> <div class="address clearfix"> <address class="widget-address widget-address-stack widget-address-icons-1"> <div class="widget-address-field"> <svg xmlns="http://www.w3.org/2000/svg" class="address-icons" width="16px" height="16px" viewBox="0 0 496 512"><path d="M336.5 160C322 70.7 287.8 8 248 8s-74 62.7-88.5 152h177zM152 256c0 22.2 1.2 43.5 3.3 64h185.3c2.1-20.5 3.3-41.8 3.3-64s-1.2-43.5-3.3-64H155.3c-2.1 20.5-3.3 41.8-3.3 64zm324.7-96c-28.6-67.9-86.5-120.4-158-141.6 24.4 33.8 41.2 84.7 50 141.6h108zM177.2 18.4C105.8 39.6 47.8 92.1 19.3 160h108c8.7-56.9 25.5-107.8 49.9-141.6zM487.4 192H372.7c2.1 21 3.3 42.5 3.3 64s-1.2 43-3.3 64h114.6c5.5-20.5 8.6-41.8 8.6-64s-3.1-43.5-8.5-64zM120 256c0-21.5 1.2-43 3.3-64H8.6C3.2 212.5 0 233.8 0 256s3.2 43.5 8.6 64h114.6c-2-21-3.2-42.5-3.2-64zm39.5 96c14.5 89.3 48.7 152 88.5 152s74-62.7 88.5-152h-177zm159.3 141.6c71.4-21.2 129.4-73.7 158-141.6h-108c-8.8 56.9-25.6 107.8-50 141.6zM19.3 352c28.6 67.9 86.5 120.4 158 141.6-24.4-33.8-41.2-84.7-50-141.6h-108z"></path> </svg> <span class="address-meta">224 N. 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