“I want to help out, but I don’t know how”
By Jordann Coleman, MSUD Advocacy Chair
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 and fundraising efforts.
Volunteering doesn’t have to be a large commitment. Here are some tips from a seasoned rare disease advocate about how you can become an MSUD & Rare Disease Advocacy Champion:
Identify Your Elected Officials
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 Others
Get involved with or follow other organizations that are committed to rare disease advocacy such as:
- Newborn Screening Regional Collaboratives (www.nccrcg.org/),
- NORD (www.rarediseases.org),
- Global Genes (www.globalgenes.org),
- Everylife Foundation (www.everylifefoundation.org),
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 About The 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:
- MSUD Patient/Parent Profile
- Submit an article to themighty.org
- Find a parallel publication of interest and tie in you MSUD experience. For example, those who rode in the Million Dollar Bike Ride, could write a post about why they rode.
Stay In Touch and Encourage Others
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.
It can seem daunting and intimidating to get involved with advocacy if you have no experience. The MSUD Family Support Group will give you all the support and guidance you need to get.