VoA Foundation Newsletter

December Issue:

  • Advancing the Bill of Rights Through Our Efforts

  • Alzheimer’s Resources

  • About the VoA Foundation

  • Get in Touch!

About the VoA Foundation

We are proud to introduce the VoA Foundation, an educational initiative born from Voices of Alzheimer’s. Our organization, led by individuals living with Alzheimer's, is on a mission to transform the landscape of Alzheimer's care and understanding.

Through the VoA Foundation, we aspire to eradicate stigma, champion equality, and craft educational resources that shed light on cutting-edge innovations in care and treatment. Our vision? A world in which individuals grappling with Alzheimer's and other cognitive illnesses can embrace a life filled with well-being and joy.

Advancing The Bill of Rights Through Our Efforts

As the year comes to an end, we pause to reflect on the progress Voices of Alzheimer’s and the VoA Foundation have made in raising awareness, advancing care, and advocating for the fundamental rights of people living with Alzheimer's. Over the past year, we've highlighted each of the ten rights outlined in our Bill of Rights for People Living with Alzheimer's by sharing personal stories in our newsletter. These stories have brought to life the challenges and resilience of individuals living with Alzheimer's, helping to empower and protect those impacted by the disease. Today, we bring all these rights together to celebrate how far we’ve come, the work still ahead, and the incredible resilience of the Alzheimer’s community.

Alzheimer’s Resources

At the VoA Foundation, we are committed to providing valuable resources and support to those affected by Alzheimer's and other cognitive illnesses. We have compiled the best resources from leading Alzheimer’s organizations to provide the most comprehensive expertise for those living with the disease and their loved ones. Our subject areas include:

Follow Us!

Questions? Want to get in touch? Email us at voa-foundation@voicesofad.com.

Dignity & Respect

We have the right to always be treated with dignity and respect.

At the VoA Foundation, we are proud to be expanding the reach of the Sunflower Program, a groundbreaking initiative designed to empower individuals with hidden disabilities, including those living with Alzheimer’s, to discreetly communicate their needs in public spaces. This year, we launched a letter campaign aimed at encouraging major airlines to adopt the Sunflower Program, ensuring that passengers with invisible disabilities are treated with the dignity and respect they deserve while traveling.

Prompt Diagnosis and Treatment

We have the right to be diagnosed and treated promptly.

Recognizing the crucial role early detection plays in Alzheimer’s care, the VoA Foundation launched a video this year titled “The Importance of Early Detection in Alzheimer’s Disease.” Through powerful storytelling and expert insights, the video highlights the benefits of prompt diagnosis and intervention. By fostering understanding and removing stigma, we aim to empower individuals to seek early care, ultimately improving outcomes and enhancing quality of life for those living with the disease. We invite you to join us in amplifying this vital message by sharing the video with your network. Together, we can inspire action that can make a meaningful difference in the lives of those affected by Alzheimer’s.

Annual Cognitive Screenings for Detecting Alzheimer’s and Related Disorders

We have the right to annual cognitive screenings using the most effective tools in detecting and diagnosing Alzheimer’s disease and related disorders.

Voices of Alzheimer’s is committed to advancing the early detection of Alzheimer’s and related disorders through our Early Detection of Cognitive Impairment project. This initiative seeks to integrate annual cognitive evaluations into routine healthcare for older adults, ensuring that cognitive health is prioritized alongside other aspects of well-being. The project includes surveying primary care physicians to assess current practices, publishing vital information on ADRD treatment options, and developing educational resources to increase public awareness.

Stay tuned for more updates on this important project!

Access the Full Range of Screening, Diagnostic, and Treatment Options

We have the right to affordable, expeditious Medicare and other payer coverage for the full range of screening, diagnostic, and treatment options validated and approved by the FDA for Alzheimer’s disease, including but not limited to cognitive screening, diagnostics, genetic counseling, and access to new biologic therapies, whether via infusions or self-injections.

In 2024, Voices of Alzheimer’s took strong action to challenge Medicare’s current approach to Alzheimer’s diagnosis, treatment, and care by advocating for more equitable policies. Our key efforts included:

These policy positions reflect our ongoing commitment to
ensuring that individuals living with Alzheimer’s have
affordable access to the full spectrum of FDA-approved
screenings, diagnostics, and treatments.

Fair Access in Treatment and Care for Patients with Early Onset Alzheimer’s

We have the right, in the case of Younger Onset Alzheimer’s, to access the same treatment and care as any person with mild cognitive impairment (MCI) due to Alzheimer’s disease and related cognitive illnesses covered by Medicare.

VoA is actively working to eliminate the barriers faced by individuals with younger-onset Alzheimer’s by advocating for immediate access to Medicare Disability benefits upon diagnosis. Currently, individuals with younger-onset Alzheimer’s must wait 24 months to qualify for Medicare coverage. This delay can significantly hinder access to critical treatments and support services at a time when early intervention is most crucial. With two FDA-approved treatments available to slow early-stage disease progression, ensuring timely access to treatment is more important than ever. VoA is a primary sponsor of efforts to remove the 24-month waiting period, working alongside sister organizations to expand access through Social Security Disability programs. By ensuring individuals with younger-onset Alzheimer’s can access Medicare benefits without delay, we aim to improve treatment outcomes and quality of life for those affected.

Barrier-Free Participation in Clinical Trials for Alzheimer’s Disease

We have the right to participate in clinical trials without facing unnecessary barriers, and the right to treatments that have undergone rigorous testing in diverse populations.

The VoA Foundation developed a dedicated Resource Page that offers a wealth of resources to help individuals and families navigate the complexities of Alzheimer’s, including clinical trials. Our page features curated information from leading Alzheimer’s organizations on a wide range of topics, such as Understanding Alzheimer’s, Clinical Trials, Living Well with the Disease, Community Resources, and Care Partner & Wellness Resources. By providing these valuable resources, we empower patients, caregivers, and loved ones with the knowledge and tools necessary to make informed decisions about clinical trials and other aspects of Alzheimer’s care.

Quality Care in All Medical Settings

We have the right to receive quality care in all medical settings from professionals trained in interacting with and caring for people living with cognitive impairment.

The VoA Foundation is sponsoring the Cognition in Family Medicine Settings program, led by Dr. Barak Gaster at University of Washington Medical Center and the American Academy of Family Physicians, to improve early detection and care for cognitive impairment. This initiative aims to equip 125,000 family physicians with toolkits and educational resources, ensuring better care and support for individuals with Alzheimer’s and related conditions. By enhancing training for primary care providers, we’re working to ensure quality care for those living with cognitive impairments in all medical settings.

TAs we reflect on the work of Voices of Alzheimer’s and the VoA Foundation this year, we are proud of the progress we've made in raising awareness, advocating for the rights of those living with Alzheimer’s, and advancing meaningful care. From spreading awareness about the importance of early detection to advocating for equitable treatment with CMS, we’ve made significant strides. Yet, our journey is far from over. There is still much work to be done to ensure that every person living with Alzheimer’s receives the dignity, care, and respect they deserve, and we’re excited to continue the momentum into the year ahead.

In the meantime, we invite you to explore the incredible stories and experiences of individuals living with Alzheimer’s that we’ve shared throughout our newsletter this year. We hope you'll join us in our ongoing efforts to build a more inclusive and compassionate future for all. Together, we can continue to make a lasting impact.