Since Vigil Neuroscience was founded in 2020, our team has been dedicated to developing a treatment for ALSP. We are very pleased that our efforts have led to the first ever interventional clinical trial for the ALSP community, the IGNITE trial, which is currently underway. We have also been privileged to meet with and hear from many members of the ALSP community including those living with ALSP, caregivers, family members, physicians and genetic counselors who have shared their perspective and informed our work in many ways.
Members of the patient advocacy community including Sisters’ Hope Foundation, the leading organization for people affected by ALSP, have discussed the role of genetic testing in confirming diagnosis. Yet, in our ongoing discussions with people living with ALSP, as well as their families and caregivers, the issue around a lack of access to genetic testing and counseling to confirm a diagnosis of ALSP has been a frequent topic. We have heard about the challenges and costs associated with testing and the lack of support and information to help patients understand their results. Today, as we come to the end of ALSP Awareness Month, we are pleased to announce Vigil Neuroscience is initiating a new program called ALSP Aware, a free genetic testing and counseling program for members of the ALSP community.
About the ALSP Aware Program
• ALSP Aware will make genetic testing services available at no cost to anyone age 18 and over who is a resident of the United States with a known family history of ALSP.
• This program will be conducted by InformedDNA, the largest independent provider of genetic counseling services.
• Individuals and families who choose to enroll in the ALSP Aware program will work closely with a genetic counselor from InformedDNA for an initial genetic counseling session and, as appropriate, sample collection and processing and review the test results. The genetic counselors at InformedDNA are highly trained specialists in inherited neurodegenerative conditions.
• Participants will also have access to a range of information and services that are custom designed to support individuals and families at risk of ALSP.
We are working on the final program details and expect ALSP Aware to officially launch in May 2023. If you are interested in information and updates about ALSP Aware, we encourage you to contact us via email at patients@vigilneuro.com or contact Sisters’ Hope Foundation at heidi@sistershopefoundation.org. You can also visit www.vigilneuro.com for updates about this program and our work in ALSP.
For so many people affected by ALSP, diagnosis and efforts to manage their care have been made more difficult because they could not easily access genetic testing. Our goal with ALSP Aware is to make the journey easier with testing services, information and guidance that will make a meaningful difference. We thank you so much for your support and we look forward to updating you about this important new program in the weeks ahead.
Ivana Magovčević-Liebisch, PhD, JD
President & Chief Executive Officer
