Light The Way is an online platform that offers free at-home genetic counseling, testing, and education for people living with ALS and those at risk for genetic ALS.
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Light The Way provides genetic education and pre- and post-test virtual counseling with an experienced ALS genetic counselor who can answer your questions, guide you through the process, provide emotional support, and connect you to resources. You can sign up, speak or email with a counselor, and then decide whether or not you want to get tested.
Participants will be invited to participate in Beacon, a research study that aims to help understand the mental health impacts of undergoing genetic testing for ALS. Participants don’t need to visit a doctor or hospital to participate. |
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Who can participate?
Light The Way is currently enrolling participants who are 18 or older and live in the United States. You may participate if you have:
*If you have already been tested for genetic ALS and would like additional support, you can upload your test results and receive guidance from a genetic counselor.
- An ALS diagnosis
- ALS symptoms
- A family history of ALS
- Genetic test results*
*If you have already been tested for genetic ALS and would like additional support, you can upload your test results and receive guidance from a genetic counselor.
Disponible en españolUsted puede participar en este programa de asesoramiento y prueba genética para la ELA en español si vive en los Estados Unidos. Aprenda más |
Available in SpanishYou can participate in this ALS genetic counseling and testing program in Spanish if you live in the United States. Learn more |
How much does it cost?
There is no cost to participate in this research program, which includes sample collection kits with pre-paid postage, lab testing, and pre- and post-test counseling, education, and support.
How does it work?
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Once you sign up, you will communicate with an ALS genetic counselor by video, phone, or email. The counselor will answer your questions, provide information, and offer guidance as needed. If you decide that testing is right for you, you will receive a sample collection kit in the mail, provide a saliva sample, and mail it to the lab.
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While waiting for test results, which typically takes 6-12 weeks, your genetic counselor will share educational information with you and be available for support. Light The Way is a research study. Test results will not appear on your medical record, which can help lower the risk for potential genetic discrimination.
If you choose to know the results of your test, your same counselor will share the results, explain what they mean, and provide guidance on possible next steps such as telling family members, accessing therapies and clinical trials, exploring family planning options, and connecting with peer support. Your counselor will be available for ongoing emotional support as needed.
If you choose to know the results of your test, your same counselor will share the results, explain what they mean, and provide guidance on possible next steps such as telling family members, accessing therapies and clinical trials, exploring family planning options, and connecting with peer support. Your counselor will be available for ongoing emotional support as needed.
Learn More
Deciding whether or not to get tested for genetic ALS is a highly personal decision. Everyone’s situation is unique, which is why it can be helpful to share your specific circumstances and concerns with a genetic counselor.
If you are interested in speaking or emailing with a counselor at Light The Way, you can visit the website to either sign up or send a message through the “Speak to our team” button.
If you are interested in speaking or emailing with a counselor at Light The Way, you can visit the website to either sign up or send a message through the “Speak to our team” button.
About Light The Way and Sano Genetics
Light The Way was created by Sano Genetics, an established platform that provides genetic testing for multiple diseases. A team of scientists, ethicists, genetic counselors, people living with ALS, family members, and advocates co-designed Light The Way according to current best practices.
The goal of the program is to make free, high-quality genetic counseling, testing, education, and support available to anyone living with ALS or at risk for genetic ALS, no matter where they live. The research component of the program seeks to better understand the psychological impact of ALS genetic testing in order to develop new policies to support those at risk of genetic ALS.
The goal of the program is to make free, high-quality genetic counseling, testing, education, and support available to anyone living with ALS or at risk for genetic ALS, no matter where they live. The research component of the program seeks to better understand the psychological impact of ALS genetic testing in order to develop new policies to support those at risk of genetic ALS.
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