Search


Genetic and Metabolic Dietitians International (GMDI), the professional group to which most of the dietitians you work with belong, holds conferences every other year.

This April I represented our group at their conference “Metabolic Nutrition in the 21st Century: Looking Towards the Future,” held in Scottsdale, Arizona. The purpose of my attendance was to exhibit and network; to teach dietitians about our support group, learn about advances in the field and network with representatives from other support groups.

As an exhibitor, I provided attendees with our brochure, research highlights, information about our group, and information about our upcoming symposium. Most were familiar with our group but weren’t aware of all we do. Others did not know about us and were happy to take information so they could refer families with MSUD to us for support. Dietitians expressed an interest in partnering with us for the development of educational materials in different languages, especially Spanish and Arabic.

In speaking with representatives of other support groups, I found that advocacy and fundraising were key focuses. While the PKU organization is unique in that they have a paid executive director, most rely on the dedication of volunteers as we do.

At this conference I learned of the Metabolic Diet App Suite, developed by dietitian Keiko Ueda and colleagues at British Columbia Children’s Hospital. Please read Keiko’s article in this newsletter describing the app, as I believe many of you will find it useful in dietary compliance.



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

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.

Read More

NBS-MSUD Connect: Advancing MSUD Research And More

NBSCONNECT.ORG

Rare disease registries have received attention in recent years because of the many ways in which they can benefit the rare disease community.

Read More

Cambrooke Foods Hosts Local Event

Cambrooke has been doing cooking demonstrations, social meet ups and educational events for patients, their families and the clinician’s that support them for many years.

Read More

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.

Read More

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.

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