Advocacy is about changing hearts and minds in support of a better life for a community of people facing similar challenges.
Advocacy can be individual or collective.
- Who should be an advocate for people living with ALS?
Anyone and everyone who cares about people living with ALS and the challenges they face.
The most effective advocates are the people living with ALS and the organizations that take care of people living with ALS.
- How can the ALS Society of New Brunswick and Nova Scotia help you advocate; for yourself (or someone you love) or for the ALS Community at large?
- Identifying and understanding the challenges of living with ALS. We do this by listening to you, your caregivers, and healthcare team members.
- Connecting you to the right people and organizations in a position to bring about change and helping you communicate your challenges and recommendations for a solution.
- Maintaining a good relationship and providing factual information with all levels of government and other organizations that are (or should be) supporting you.
- Making sure your voice is heard/represented when decisions are being made that affect your life.
- Involve your government representative. From time to time, the ALS Society of New Brunswick and Nova Scotia puts out a call for people to email, write, or phone their government representatives to ask for a change in policy, for support for funding, or for a solution to a particular challenge. The ALS Society provides the content and list of contacts and may ask you to forward that to your local provincial or federal government representatives. As there is “strength in numbers, spreading the word to your friends, family, and co-workers to do the same sends a strong message that cannot be ignored.
- Sharing your personal story. If you are able and willing to share your personal story of living with ALS in print and on social media you will give the ALS Society of New Brunswick and Nova Scotia a powerful tool with which to affect change. Please contact us at hcarter@alsnbns.ca to explore what is involved and how we will support you to do this.
- Social Media Posts. Share our Facebook Page and other social media sites with those in your circle of influence.
- Donate. No gift is too small and all gifts add up to make a big difference. When you are able, please support the ALS Society of New Brunswick and Nova Scotia with your financial gifts and encourage others to do the same. This allows us not only to continue our equipment loan program but to advocate on your behalf.
- What are key messages and how are they used?
Key messages are the main points of information you want your audience to hear, understand, and remember.
Everyone involved in advocacy should be presenting the same message(s) to the appropriate people (decision makers, funders, the general public).
Our key messages:
- The ALS Society of New Brunswick and Nova Scotia is the organization for everything people need to know about ALS.
- The ALS Society of New Brunswick and Nova Scotia is a non-profit organization, funded by donors and by grants from the New Brunswick and Nova Scotia governments. The grants are annual and there is no multi-year funding agreement.
- Why do we exist? Because everyone deserves the chance to live beyond their limits, courageously and boldly, to find joy, to overcome, to celebrate, to LIVE STRONG.
- While acknowledging the severity and impact of the disease the ALS Society supports a culture of living your best life as well as you can as long as you can for people and their families.
- A voice at the table. Having served well over 1,000 people living with ALS; the ALS Society of New Brunswick and Nova Scotia is uniquely positioned to contribute to a meaningful conversation as policy is being developed.
- The ALS Society reduces strain on the healthcare system by providing breathing equipment, hospitals beds, patient lifts, bath assist equipment and much more. This reduces emergency room visits and the use of paramedics and ambulances. It keeps beds available for acute care and when ALS clients do need the hospital the Society is often able to facilitate expedient delivery of equipment allowing the person to be discharged earlier.
- It is imperative that the society be supported financially by government as people with ALS are personally fundraising for drugs, wheelchair vans, renovations to homes, nursing care.
- The average person with ALS in New Brunswick and Nova Scotia borrows 5 pieces of equipment valued at $70,000.
- There is no charge to borrow equipment from the ALS Society of New Brunswick and Nova Scotia.
- Needs Testing – Due to the loss of employment and additional expenses of ALS, there is no needs testing required to participate in the equipment loan program.
- What is the advocacy focus for the ALS Society?
The Advocacy Team of the ALS Society of New Brunswick and Nova Scotia has chosen three key advocacy priorities for 2023 – 2025:
- The improvement of home, long term, and palliative care to meet the ever changing needs of people living with ALS.
- Timely access to drugs approved to treat ALS.
- Increasing awareness of the disease to the healthcare community.
The Advocacy Team is comprised of board members, people who are or have experienced ALS, and community members. The Advocacy Team meets via Zoom monthly for one hour in the evening. If you would like to volunteer for our Advocacy Team please contact kcarter@alsnbns.ca
