Volunteering doesn’t have to be a large commitment. Here are some tips I received from a seasoned rare disease advocate about how you can become an MSUD & Rare Disease Advocacy Champion:
- 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 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 (PKU or other allied disorders). 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:
- 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 ran in the Denim Dash, could write a post for Runner’s World about why they ran.
- 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 more involved. A session on Advocacy Basics will be presented at next year’s symposium, and we are in process of creating a webinar with tips on getting active. Rare Disease Legislative Advocates (RDLA) is a great resource for staying informed and getting involved with rare disease issues. Some of our members went to meetings with members of Congress during the past summer recess. RDLA scheduled all of the meetings as well as helped provide information to the advocates in the meetings.
Making lives better for those with MSUD and their families depends on creating awareness and advocating for our cause. If everyone chips in a little, our impact can be substantial.