ACT Genetics offers presymtompatic genetic counseling and test coordination for Amyotrophic Lateral Sclerosis (also known as ALS or Lou Gehrig’s Disease) in the state of Idaho by a board certified, licensed genetic counselor. Presymptomatic testing is for individuals who do NOT have symptoms of ALS but, based on family history, may have inherited an ALS-causing gene from a parent with ALS.  Our protocol uses many of the elements used for presymptomatic testing for other adult onset neurodegenerative diseases and is personalized to take into account each patient’s needs, while also maintaining high standards.

Genetic testing for ALS is complex.  In order to be able to provide accurate and reliable test results in an at-risk family member, it is essential that a family member with ALS have a documented genetic mutation that is known to cause ALS.  If someone in your family has ALS and has not been tested for an ALS-causing genetic mutation, talk to the affected relative’s neurologist or medical geneticist to see if DNA testing can be done. In the absence of confirmed documentation of an ALS-causing gene, we are not able to offer genetic testing.   

Genetic testing for ALS does not currently identify all disease-causing changes. One option for families to consider is storing a sample of DNA (DNA Banking) from the relative with ALS for testing in the future when more is known about the genetic causes for ALS.

More information on genetic testing and ALS can be found here and here.

Our services include the following appointments:

  • Presymptomatic ALS Initial Consultation (90 minutes of direct counseling, plus record review and documentation). This session includes medical record and family history analysis, education about ALS symptoms and genetics, discussion of family and personal issues that arise in the testing process, potential risks and benefits of ALS testing, and strategies for deciding whether genetic testing is right for you. This appointment is appropriate for anyone who is considering being tested for ALS.  It is required before genetic testing can be ordered. Available without a doctor’s referral. Cost $150

  • Genetic Test Coordination and Results Disclosure: This service is for individuals who have completed the Presymptomatic Genetic Counseling Session, have a relative with a confirmed ALS disease-causing mutation and have decided to pursue genetic testing for ALS. Coordinating with you, your doctor, and the genetic testing laboratory, the genetic counselor will make sure the testing process goes smoothly for you and your family and that the results are provided to you in a time and manner that are comfortable for you. This service includes a pre-test appointment, test coordination, delivery of results, appropriate documentation, and up to two brief follow-up phone or video appointments in the 12 months after the results are given.  Please be aware the genetic testing is a separate cost not included in the appointment price. Insurance coverage is variable and will be discussed during the consultation. Cost $150

  • Follow-up appointments (30 min increments): After one of the above-listed appointments has been completed, follow-up appointments to address specific issues or new questions. Cost $50 per 30 minutes

  • ACT Genetics offers counseling and coordination for DNA banking. DNA banking allows us to store genetic information for use at a later date when superior technology and knowledge is available. For more information download this helpful info guide. DNA Banking Consultation (30 min): This session includes education on DNA banking, potential risks and benefits of storage, and strategies for deciding if DNA banking is right for you and your family. This appointment is appropriate for anyone who is considering and may have additional questions. Collection of the specimen can be coordinated for you with the storage facility. Please be aware the DNA banking is a separate cost not included in the appointment price. Insurance coverage generally does not cover DNA banking. Cost $40

At this time we are a direct patient billing service which allows us to eliminate administrative costs and pass those savings on to you. We are happy to provide you with information to send to your insurance company for reimbursement after services are rendered. Several insurers do reimburse for genetic counseling using the CPT 96040 code. We accept all major credit cards and HSA.  Payment is due at the time of the appointment. We will provide a full refund for cancellations if made within 48 hours of the appointment. We also offer a payment sliding scale for individuals in need.  Please contact us for more information.