Advocacy
Advocacy helps create change for people living with ALS by making sure their voices are heard. Whether you are advocating for yourself, someone you love, or the broader ALS community, you are not alone.
What is Advocacy?
Advocacy means changing hearts and minds in support of a better life for people facing similar challenges. It can happen one on one or collectively, and it begins with caring enough to speak up.
Who Can Be an Advocate?
Anyone who cares about people living with ALS can be an advocate. People living with ALS and their families bring powerful lived experience, and organizations that support them help turn those experiences into meaningful change.
How We Support You.
We support advocacy by listening to people living with ALS, caregivers, and healthcare professionals to better understand the challenges they face. We help connect individuals with the right people and organizations, support clear communication of needs and solutions, and maintain strong relationships with all levels of government to ensure your voice is represented.
How You Can Help.
There are many ways to take part in advocacy, and every effort matters. You may choose to contact your government representatives when we share calls to action, share your personal story if you feel comfortable, help spread awareness through social media, or support this work through donations that allow us to continue advocating on your behalf.
Our Key Messages
Clear and consistent messages are essential to effective advocacy. The ALS Society of New Brunswick and Nova Scotia is the trusted organization for information, services, and support related to ALS in our region. We are a non-profit organization funded through the generosity of donors and annual grants from the governments of New Brunswick and Nova Scotia, without multi-year funding guarantees.
Having supported more than 1,000 people living with ALS, we bring informed, lived experience to conversations where policies and funding decisions are made. Our services help reduce strain on the healthcare system by providing critical equipment and support that allows people to remain safely at home longer, avoid unnecessary hospital visits, and transition more smoothly when care needs change. Sustained government support is essential, as people living with ALS and their families are often fundraising personally for medications, mobility equipment, home modifications, and care.
Why Advocacy Matters.
Advocacy helps reduce strain on the healthcare system by supporting people with ALS to remain at home longer through access to essential equipment and supports. With an average equipment loan value of $70,000 per person and no cost or needs testing, this work helps preserve dignity, independence, and access to care when it is needed most.
Our Advocacy Priorities
(2023 – 2026)
Our advocacy efforts are focused on improving home, long term, and palliative care, ensuring timely access to ALS treatments, and increasing awareness of ALS within the healthcare community.
Be Part of Advocacy.
Advocacy looks different for everyone, and participation should always feel supported and respectful of where you are. When you are ready, we are here to walk alongside you.
Be an Advocate for Our Community
Advocacy is stronger when voices come together, and there is a place for you in this work. Our advocacy efforts are shaped by people living with ALS, caregivers, board members, and community supporters who care deeply about improving life for those affected by the disease.
If you are interested in being an advocate for the ALS community and contributing your voice, experience, or perspective, we invite you to reach out to our CEO to learn more about how you can get involved. Advocacy opportunities vary and are designed to be respectful of your time, comfort, and capacity.
To start the conversation, please contact kcarter@alsnbns.ca.