Have you ever wanted to help out the MSUD Family Support Group but were unsure about how to contribute? The MSUD Family Support Group is actively looking for volunteers to assist with advocacy.
Volunteering doesn’t have to be a large commitment. Here are some tips about how you can become an MSUD & Rare Disease Advocacy Champion.
If you’d like to help out, but don’t know how, we can help you find ways to be an active advocate for the MSUD community.”
Learn who your elected officials are and follow their voting and policies for rare diseases. Calls, tweets, emails, and visits to your officials can go a long way. Be sure to share your personal story!
If you want to make more of an impact – volunteer for the campaigns of the elected officials in your area. This will enable you to get to know their staff so they’ll be familiar with you when you show up with a specific ask (request for support).
Get involved with or follow other organizations that are committed to rare disease advocacy such as:
or other metabolic disorder organizations, such as PKU. Some of these larger organizations are able to train advocates and may even pay for attendance at conferences. A great way to learn how to advocate is by hitching yourself to an additional cause.
Write human interest articles/blog posts on people within the MSUD community who are doing interesting and amazing things. Focus the article on what is interesting about them but include a 2-3 sentence description of MSUD. This will allow the reader to become engaged in the topic and inspire them to learn more about the disease.
Make the articles positive & uplifting as well as educational and timely. Some suggested article ideas are:
Set Google Alerts for news about diet trends, protein, etc. worldwide. Different alerts could lead into new conversations and opportunities to talk about MSUD.
If friends & family ask how they can help – encourage them to advocate for MSUD. The more voices we have talking about MSUD, the more impact we can have on our lawmakers.
