With Dystonia Awareness Month quickly approaching in September, Jason Young - dystonia thriver and Cape Breton Support Group Leader, shares some essential tips to successfully start and grow your dystonia awareness campaign in your community.
1. Do your homework
Ensure you are prepared to handle questions. DMRF Canada’s website provides up-to-date, valuable information on all aspects of dystonia. Take the time to read, making notes along the way, on the most important facts and talking points.
Create a list of businesses/organizations/landmarks you plan to approach. Each conversation will be different as each entity will have its own expectations and resources. Be mindful of how they may be able to help and offer options whenever possible.
2. Be genuine
As dystonia patients, the tendency may be to hide your symptoms and not put your vulnerabilities on display. While it is quite tough to leave yourself exposed in this manner, it will get easier with time. And if you take the time to explain your symptoms it will put both yourself and your target audience more at ease.
Do not hide your symptoms if they happen to show up during conversations. The goal is to educate people and show and tell can go a far way. Be yourself and you already will be halfway towards a successful campaign.
3. Rehearse
A great way to prepare yourself is to try your pitch on family members, friends, and other patients. This will give you great feedback, allowing you to make changes to your presentation as needed.
If you plan to meet with a politician or business owner or media personality, give some prior thought to what you need to ask them, what you want to convey, and how you want to present yourself.
4. Know your audience
In my own experience, there have been many different conversations, approaches, and plans I implemented to cover various audiences I’ve engaged with. From students to politicians (including their staff who you will have to get through first), to businesses (you may have to start with an Office Admin or Security and work your way up until you reach the decision makers), to radio and television personalities, as well as the public.
Above all, be respectful, kind, polite, empathetic, approachable, and actively listen to each person.
5. Think outside of the box
It’s okay to start small gaining incremental victories with each campaign as your network grows. Make use of friends/family who may have contacts that can help you with your campaign. Remember also; the people you are connecting with will have contacts of their own that you can encourage them to share your messages.
Your local Councillor/political connections within the local government or other levels of government can go a long way in getting your message across. Business owners can provide leads to their colleagues who may be willing to help you. And media personalities can also be an untapped resource in helping you get your message across multiple media platforms.
Do not limit yourself, if you have an idea that would benefit your cause, follow through!
6. Highlight the mutual benefits
One of the best tools is to share similar or impressive supporters you already have onboard. Share with your audience that their business, location, and landmark, will be promoted on your social media platforms, giving them a wider reach that they may not have had before. This is a very valuable tool that you should not be shy to use.
7. Make it easy for people to help and your success rate will be surprisingly high
One of the biggest and most heartwarming discoveries I have made over the last few years is that people genuinely want to help. Public figures and business owners often want to show themselves in a good light.
If you approach them with the mutual benefit angle as well as the simplest way, they can help you (social media posts, signs and/or displays in shops, a simple change to add more blue (lights, store displays, clothing, etc.), they will almost always say YES to helping you.
8. Express your gratitude
If someone is unable to help you this year, it doesn’t mean they have no intention of helping you in the future. Also, if they are unable to help due to extenuating circumstances, they may come back to you with some suggestions on who may be able to show their support. It takes very little effort to show gratitude to anyone who is willing to take the time to hear us out. Thank them and keep all bridges intact.
Please keep in mind, that those who are willing to help, do so out of the kindness of their heart. Be happy, you have accomplished something that can help change the lives of thousands of people. You have educated someone about dystonia, and they are pledging their support for your cause. Additionally, they will likely share what they have learned with their family, co-workers, as well as customers.
9. Tailor information for specific purposes/audiences
With Politicians, provide them with the information you want them to share. Most politicians are inundated with requests for various types of help. If you connect the dots for them, even providing them a write-up of what you would like them to share on their own social media and in public forums, it’s a simple matter of copying and pasting for them or their assistants. In turn, this may prompt other politicians at other levels to do the same.
You can also access the DMRF Canada’s Press Kit as well as a letter template for your local government representative that you can customize to share.
10. Be bold
Don’t be afraid to approach local personalities who have large followings. Use the items in your toolkit to make it a very beneficial step for both parties.
As time goes by, you will eventually discover that the worst thing that can happen is someone will say, “No”. In my experience, this reply represents an extremely small percentage of total requests. And in some cases, a person who was unable to help due to time constraints, previous commitments, etc., has come back the next year to offer help.
No Awareness is without value. Whether you are reaching elementary students, teenagers, young adults, married and single adults, or seniors. No matter their age, occupation, background, or religious beliefs, each and every single person we educate about dystonia, the closer we get to improved funding for research, increased numbers of dystonia-educated doctors, better treatments, faster diagnoses, and potentially a cure for at least one form of dystonia.
DMRF Canada thanks Jason and his team for their amazing efforts to raise awareness of dystonia and improve the dystonia community.