Search

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 I received from a seasoned rare disease advocate about how you can become an MSUD & Rare Disease Advocacy Champion:

  1. 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!
    1. 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).
  2. 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.
  3. 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:
    1. MSUD Patient/Parent Profile
    2. Submit an article to themighty.org
    3. 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.
  4. Set Google Alerts for news about diet trends, protein, etc. worldwide. Different alerts could lead into new conversations and opportunities to talk about MSUD.
  5. 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.

From The Editor

Hello to my MSUD family! The power of this family hit home this summer, when Hannah (Classic MSUD age 23 years) and I visited Israel.

Read More

Advocacy

As our legislators headed home for their August break, Rare Disease Legislative Advocates got busy.

Read More

20th Annual White Horse Beach Charity Golf Tournament

On July 29, 2017 Charlie O’Rouke and his committee held the 20th Annual White Horse Beach Charity Golf Tournament.

Read More

Indigo Charlie Mays - Variant MSUD Age 4

Meet our girl Indigo Charlie Mays. After a smooth pregnancy and delivery, she was born on July 21st, 2013 in Seattle, WA.

Read More

Fundraising

In the 2016 survey of the membership of the MSUD Family Support Group, research for improved treatments and potential cure was rated “most important” by 90% of the responding members.

Read More

I want to help out, but I don’t know how

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.

Read More

Transform

A Child's Life

Subscribe to our mailing list

Signup To Our Newsletter Signup with your email address to receive news and updates