By Jordann Coleman, Mom to Carter,
Age 2, Classic MSUD

The MSUD Family Support group recently created an advocacy committee to help steer collective efforts in issues that are important to those with MSUD and their loved ones, and I have been appointed Chair. Although the position is in its infancy, the advocacy efforts of our members are not. In the coming months, we will continue to identify advocacy opportunities for our group. This may also include issues that are not specific to MSUD but to others with metabolic disorders or the general population. Our goal is to help enhance the lives of those living with MSUD.

At the end of 2014, the MSUD Family Support Group was added as an official member organization of the National Organization of Rare Diseases (NORD). With our NORD membership, the MSUD Family Support Group will become part of a larger voice for the rare disease community and have the backing of an organization with an aggressive public policy agenda. Many of you may remember the Newborn Screening Reauthorization Act that was stalled in Congress this past fall. NORD was a key group that garnered support from the public to help push the passing of this bill.

In 2015 and beyond we will look to extend our reach to the genetics regional collaboratives across the country as well as attend industry conferences and Hill Days to spread awareness of MSUD.

We had a really nice showing from the members on Facebook for Rare Disease Day this year. We saw so many of the beautiful faces who have this disease and their loved ones. It was inspiring to hear everyone’s stories. We have some exciting ideas on how to expand our presence for Rare Disease Day next year. Stay tuned.

If you have any issues that you feel are important to the MSUD or Rare Disease communities, please bring them to our attention. Issues can local, national, or international. No issue it too small.

If you would like to be a part of this exciting committee, we’d love to have you!

You can contact me at This email address is being protected from spambots. You need JavaScript enabled to view it. or find me on Facebook (Jordann Bass Coleman).

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