Patient
Resources

Photo above: Representatives from the Alzheimer’s Association joined Voyager at an all-employee Town Hall

One of Voyager’s core values is “Patients First.” This means we act with urgency and drive every decision with the knowledge that patients are waiting for us.

Alzheimer’s Disease

Alzheimer’s disease is a progressive neurodegenerative disease estimated to affect 6 million people in the U.S.1 and up to 416 million people globally2. The disease causes memory loss and may escalate to decreased independence, communication challenges, behavioral disorders such as paranoia and anxiety, and lack of physical control3. In 2023, the total cost of caring for people living with Alzheimer’s and other dementias in the U.S. is estimated at $345 billion4.

1. Alzheimer’s Association. 2023 Alzheimer’s Facts and Figures. Available at: https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf. Accessed February 15, 2024.
2. Gustavsson A, Norton N, Fast T, et al. Global estimates on the number of persons across the Alzheimer’s disease continuum. Alzheimer’s Dement. 2023; 19: 658–670. doi: 10.1002/alz.12694.
3. Penn Medicine. The 7 Stages of Alzheimer’s Disease. Available at: https://www.pennmedicine.org/updates/blogs/neuroscience-blog/2019/november/stages-of-alzheimers. Accessed February 15, 2024.
4. USAgainstAlzheimer’s. The Alzheimer’s Disease Crisis – By the Numbers. Available at: The Alzheimer’s Disease Crisis – By the Numbers | UsAgainstAlzheimer’s (usagainstalzheimers.org). Accessed: February 15, 2024.

Resources

Alzheimer’s Disease & Dementia Help

Amyotrophic Lateral Sclerosis (ALS)

Amyotrophic Lateral Sclerosis (ALS) is a progressive neurodegenerative disease in which the motor neurons atrophy and die, resulting in loss of the ability to speak, move, eat and, eventually, breathe. ALS is typically fatal within approximately two to five years of symptom onset1,2. The disease is estimated to impact approximately 20,000 people in the U.S.2 Multiple genes have been implicated in ALS; mutations in the superoxide dismutase 1 (SOD1) gene are estimated occur in approximately 2-3% of ALS cases, or up to 600 people in the U.S.2,3,4 There are multiple treatments available for ALS and its symptoms, but there is no cure5.

1. ALS Association. ALS Symptoms and Diagnosis. Available at: https://www.als.org/understanding-als/symptoms-diagnosis. Accessed: December 2023.

2. Mehta P., et al. Prevalence of amyotrophic lateral sclerosis in the United States, 2018. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. 2023 Aug 21:1-7. doi: 10.1080/21678421.2023.2245858. Epub ahead of print. PMID: 37602649.

3. Brown C., et al. Estimated Prevalence and Incidence of Amyotrophic Lateral Sclerosis and SOD1 and C9orf72 Genetic Variants. Neuroepidemiology. 2021;55(5):342-353. doi: 10.1159/000516752. Epub 2021 Jul 9.

4. Ricci C., et al. A Novel Variant in Superoxide Dismutase 1 Gene (p.V119M) in Als Patients with Pure Lower Motor Neuron Presentation. Genes (Basel). 2021 Sep 29;12(10):1544. doi: 10.3390/genes12101544.

5. National Institute of Neurological Disorders and Stroke. Amyotrophic Lateral Sclerosis (ALS). Available at: https://www.ninds.nih.gov/health-information/disorders/amyotrophic-lateral-sclerosis-als. Accessed: December 2023.

Resources

Dedicated to Finding a Cure for ALS | The ALS Association

Amyotrophic Lateral Sclerosis (ALS) – Diseases | Muscular Dystrophy Association (mda.org)

Expanded Access to Investigational Therapies Policy

Expanded access, also called “compassionate use,” provides a pathway for patients to gain access to investigational treatments and medical devices for serious diseases or conditions. Expanded access refers to the use of an investigational therapy (one that has not been approved by the U.S. Food & Drug Administration (FDA) or other applicable regulatory authority) outside of a clinical trial where more comprehensive safety and efficacy data are collected.

Currently, Voyager does not offer expanded access for any investigational products in development. Voyager’s goal is to provide patients with access to the programs that we are developing as safely and quickly as possible. We believe the most appropriate way to achieve this goal is through participation in our clinical trials. In accordance with the 21st Century Cures Act, Voyager may revise this policy at any time.