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Karen Dolins, EdD, RD, CDN
Mom to Hannah, Age 13

All of you who read this newsletter twice a year probably do so for a variety of reasons. Some get comfort from knowing that they’re not alone in dealing with MSUD, and enjoy reading stories written by individuals describing how they or their loved ones live with the disease, while others look for practical advice such as recipes and products. Many of us are eager for news about advances that will allow us to put MSUD behind us. Two such advances are in the areas of liver transplantation and genetic engineering.

This issue of the newsletter includes an update on medical therapy and encouraging news on genetic research. Past issues have explored liver transplant as an option (see Summer 2006 for the article written by Dr. George Mazareigos for more information on liver transplantation). Our organization does not take a position on whether liver transplantation or genetic engineering is in the best interest of our population. This is a very emotional issue for most of us, and a personal one, and we must continue to respect one another’s opinions regardless of whether we agree with them.

Putting together this newsletter requires a great deal of effort from a number of people. I rely heavily on the guidance and assistance of Joyce Brubacher, my predecessor, Adrienne Geffen who prepares the layout, and Sandy Bulcher who helps with content.

As editor, it is my job to solicit writers. We generally include a medical update, recipes which are supplied regularly by Glenda Groff, and MSUD family news which comes from all of you. Some newsletters have a theme. After a symposium, of course, we always summarize the presentations for those of you who were not able to attend. In our Winter 2007 issue, we presented a look at “MSUD Treatment Around the World.”

In my role as editor, I have become aware of issues which face us all, and feel motivated to make a difference. Our hearts all break when we hear of children whose health is impaired due to the inability to access metabolic formula. Our support group tries to do what it can. We are committed to providing formula to those in need, although we can only do so on a short-term basis as a stop-gap until the family is able to make more permanent arrangements. This task is made more difficult by the rules and regulations regarding the import of metabolic food in individual countries. Kay Larsen has been selflessly giving a great deal of her time and energy to making this happen.

We would like to do more. We would like to work with formula companies more closely, and apply for grants that would ensure that no child with MSUD anywhere in the world suffers from lack of formula. We would like to be a resource for parents struggling to ensure that their children’s educational needs are met in school, and for those dealing with emotional issues related to chronic disease. But to accomplish these goals would require a commitment from more of you. Just as this newsletter is more powerful when we hear from more of you, so will be our support group. Please volunteer: to contribute to the newsletter, to work on access to formula, to serve as a member of the board, to identify a need and fill it. After all, the more we give the more we get.

Finally, I am incredibly proud of my daughter Hannah, who became a Bat Mitzvah this year at the age of 13. In the Jewish religion, once a child becomes a Bar (boys) or Bat (girls) Mitzvah, they are responsible for their own actions, both good and bad. Hannah raised funds for our MSUD formula fund as part of a Temple social action project, and has also pledged to donate 1/3 of the money she received as gifts to the fund. Perhaps this is one of the benefits of volunteerism: we model social consciousness for our children. Volunteering brings us closer to each other. I hope to get to know more of you as you do what you can to keep our organization, and our support for each other, strong.

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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Adjusting Protein In An Adult With MSUD

A little over a year ago, in January, Jeff was just not himself. He had limited energy, was not eating well, and often appeared slightly agitated.

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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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MSUD Advocacy Update

Healthcare and issues facing the rare disease community have been at the forefront of national conversations over the past 6 months.

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MSUD Awareness Day

Now more than ever before we are hearing about National Awareness Days which are set by organizations or the government to bring attention to issues of importance.

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Advocacy

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

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Transform

A Child's Life

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