A Perspective from a New Mom with a MSUD Baby

When our baby was diagnosed with MSUD on the fifth day of his life, our lives were turned upside down. At first we avoided the internet, and were told by close family not to read anything about MSUD. After a few weeks in the hospital, we finally got the courage to go online, and immediately found the MSUD Support Group. Even before our baby was out of the hospital, we mailed our $10 check to join this support organization. In our hunger for information, we dove head-first and started reading and researching everything we could. We also knew right away that we would be attending the 2008 MSUD symposium to meet other families and hear their stories. I told my husband that it was important for us to have this support group, and become part of the MSUD community. What other choice did we have?

But then at the symposium, I started to question - what is a support group, and what does it realy mean for us? I realized that while we are all bound by the same disease, we are all quite different in our approach to this condition, and how we choose to deal with it.

We live all over the country and the world for that matter. We come from different socio- economic and cultural backgrounds. Some of us don’t even use the internet. We noticed a few things right away about different ways people manage their kids’ MSUD - some eat regular food, and some only eat the medical food. Some of the doctors keep leucine levels higher than others. Some people use filter paper, and some get blood drawn from the vein. We also heard about liver transplants, and noticed right away that some people didn’t even want to hear about it, while others couldn’t get enough information about it. This was one of the biggest surprises for us. Why aren’t people more accepting of the other families? Why weren’t there more families who have had a liver transplant at the Symposium?

The more I talked to people, the more varied opinions I heard. But then I realized, that’s what a support group is supposed to be - right? Sharing different ideas, different stories, and different suggestions. With such a small number of people with MSUD, we have to remember that we are all part of the MSUD community. It’s part of our lives now. Regardless of how you choose to handle the MSUD condition, we should not be judgmental, we should support each other the best we can.

The biggest issue that struck me at the 2008 MSUD Symposium was that nobody talked about fundraising?!?!? We all know that money makes all the difference. Money buys research, money buys treatments, and money buys drugs. Money buys exposure and education. Money is the key to...

We met a few families from the Chicago land area that were interested in getting involved in planning a fundraising event. Before we knew it, we had set a date of September 26th. The 4 families involved collected gift certificates and donations to use in our Silent Auction and raffle. A local band donated their time and played for 2 hours, and a local radio DJ was our emcee. We charged $35 at the door, of which $15 went to the bar, and $20 went directly to MSUD. We ended up with over a hundred people and had a great time. The night was a hit, and after all expenses were paid we raised over $10,000.

How did we do it, you ask? It’s really not that hard. You just have to find the right kind of fundraiser for you and your community and dive right in. There is so much information on the internet on how to do fundraising. You don’t have to have a huge event at a banquet hall, or bar. Just look at what some of your local schools do or any other organization and you will find something that fits your style.

I realize that we are a very small community, and it is very difficult to raise any significant funds, but if we all got involved we are capable of great things.

The next Symposium will be held July 24-26, 2010, at the Marriott Lincolnshire outside of Chicago. We plan to include a section on "How to put on a fundraiser" and maybe even something on "What it means to be a Support Group." Stay tuned for more information in the next newsletter. If you’d like to help out, please contact me at This email address is being protected from spambots. You need JavaScript enabled to view it.

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The MSUD Family Support Group has provided funds to Buck Institute for its preliminary studies investigating metformin

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

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A Child's Life

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