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 (, NORD (, Global Genes (, Everylife Foundation (, 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
    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.

In The Professional Journals

A Patient with MSUD: Acute Management with Sodium Phenylacetate/Sodium Benzoate and Sodium Phenylbutyrate

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My Trip To Israel

I met Avi, Dikla, and Tamar Starr last year at the MSUD Symposium in Raleigh, NC. Tamar, classic MSUD, was 2 ½ at the time, and they invited me to come to Israel and stay with them for a year.

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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.

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

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Updates To Nutrition Management Guidelines

The Nutrition Management Guideline for MSUD was first published in 2014. Since that time, there have been reports of new research and experiences that have prompted updates of the guideline.

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Our Story

On April 23 2015, our precious firstborn son Eliyahu Tuvia was born in Jacksonville, FL. All seemed well and we took our bundle of joy home.

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A Child's Life

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