An Educator’s Guide to MCADD
December, 2011
This new online and print guide is for teachers of students who have MCADD (medium chain acyl-CoA dehydrogenase deficiency). Developed by health care providers and researchers at Children’s Hospital Boston, the guide offers information about the condition, signs and symptoms of a health crisis, treatment and prevention, and a summary of the latest research. It includes a section on how teachers can help their students avoid problems, with tips provided by parents of children with MCADD.
PKU Recipes!
August, 2011
We created this tasty and sizeable collection of recipes for adults, teens, and children with PKU (phenylketonuria). The recipes were developed as part of the PKU Resource Mothers program at Children’s Hospital Boston. Many of the recipes’ authors are women with PKU who managed healthy pregnancies! The recipe collection includes ideas for main and side dishes, breakfasts, snacks, and desserts. If you are the parent of a child or teen who has PKU, cooking together can empower them to better understand and take care of their own nutrition. Enjoy!
Maternal PKU & Pregnancy Guide is online!
April, 2011
If you are a woman with phenylketonuria (PKU), and are planning to get pregnant, or already are pregnant, we created this guide for you! Developed by metabolic and nutrition specialists at Children’s Hospital Boston, the guide includes sections on PKU, Maternal PKU, genetics, newborn health, PKU recipes, and PKU & pregnancy resources. Being pregnant with PKU is challenging, but with careful planning ahead of time, and with the right diet, health care, and information, you can experience the wonder and joy of carrying and delivering a healthy baby.
Annual Consortium Meeting – 2010
November, 2010
The 2010 Annual Meeting of the New England Consortium of Metabolic Programs took place on Nov 12, 2010, at the Tower Hill Botanic Garden in Boylston, MA. The theme of this year’s meeting was “Transplantation and Other Topics in Metabolism in New England”, and included brief reports from our regional professionals, a thoughtful discussion led by Dr. Matthew Fickie on the ethics of transplantation in metabolic disorders, and a presentation by Fran Rohr, MS, RD, of her trip to China this past year as part of an effort to improve PKU screening and formula availability there. Full details and photos of the meeting are here.
PKU Camp 2010 photos are up!
September, 2010
PKU Camp at Burgess & Hayward took place in August this summer. At the camp children with PKU joined campers with and without PKU for a totally integrated week of sleep-away, summer fun. Our main low-protein chef was Erica Stelten, RD, LD, CPCC, who was joined in the kitchen by our other nutrition experts. Photos from the week are now up!
Galactosemia: Educators’ Resources
July, 2010
We’ve just posted our newly developed guides for teachers with students who have galactosemia. Children with galactosemia may have difficulties with communication, comprehension of new concepts, and sensory-motor integration skills, and must follow a strict diet. These online and print guides feature information about teaching strategies, therapies, classroom environments, teaching technologies, and other resources. Teachers are welcome to download, print, and use them.
Transition Toolkit is Online!
May, 2010
The Children’s Hospital Boston Transition Toolkit was created for teenagers who are transitioning to adulthood, and who are ready to be in charge of managing thier metabolic condition and their health in general. The toolkit includes basic FAQs about various metabolic conditions, a health summary form for teens to fill out and keep in a safe place for future reference, and a transition plan for teens to discuss and fill out with their primary care provider and metabolic specialist.
Maternal PKU Research Study Launched this Month!
April, 2010
Women with PKU who have had one or more children are invited to participate in this important research study. The study is being conducted at Children’s Hospital Boston by Dr. Harvey Levy, Dr. Susan Waisbren, and nutritionist Fran Rohr. We are conducting the study to learn more about the medical, nutritional and psychological effects of PKU and maternal PKU. This is important because very little is known about how children born to mothers with PKU do in the long-term. We welcome your participation! Learn more about the study here.
For Parents of Babies with Metabolic Disorders
March, 2010
This set of guides, now available online, are for parents of babies that have recently tested positive for a metabolic disorder, including PKU, galactosemia, or other amino acid disorders, fatty acid disorders, or organic acid disorders. Each guide explains what a certain metabolic disorder is, why a baby has it, the symptoms and effects, and the treatment.
All About Teen Challenge
February, 2010
This month we’ve added a section with information about our Teen Challenge program, including lots of great photos from past events. Teen Challenge is an exciting, three-day, summer program designed especially for teenagers (ages 13-18 years) with PKU or other metabolic conditions. The program is offered through the Metabolism program at Children’s Hospital Boston, and is designed to help teens build a supportive social network, try new and challenging activities, build resiliency and self-confidence, and build skills for independent health managment.
PKU Toolkit is Revised and Up!
February, 2010
Our comprehensive PKU Tookit has been revised and updated, and is now online! The Toolkit is designed to be a personal guide for teens and young adults with PKU, and includes comprehensive information about nutrition, diet, treatment, and lifestyle issues. It also provides information, resources, checklists, and quizzes to help young adults better manage their PKU. Also included is information about new, more convenient and tasty options in PKU formula and low-protein foods. Reading this toolkit can also be useful for family, friends and significant others of adults with PKU.
Neurocognitive Functioning and Social Emotional Development in PKU
January, 2010
This month Dr. Susan Waisbren, our Consortium’s Director, attended the High Hopes Inaugural Conference in Dallas, Texas, hosted by the National PKU Alliance. Dr. Waisbren gave talks on Neurocognitive Functioning in PKU, and on Social Emotional Development in PKU. Slides from these presentations, and other by Consortium members, are now available online.
Order Forms for Printed Materials
January, 2010
The Consortium is now offering two of it’s comprehensive booklets for sale: Moving Forward: Your Guide to Galactosemia and Primary Ovarian Insufficiency (POI), and Newborn Screening Guide for Prenatal Educators, Plus Prenatal Curriculum and Parents’ Guide. Visit our order page for details, pricing, and an order form.
Moving Forward: Your Guide to Galactosemia and Primary Ovarian Insufficiency (POI)
January, 2010
This comprehensive five-part guide, produced at Children’s Hospital Boston, contains sections for teens and women who have galactosemia and POI, and for their family members. Available online and in print, the guide explains the symptoms and underlying causes in easy-to-understand terms, and outlines ways of getting the care and support you need. It also provides a list of resources, and a glossary of medical terms.
Video Library and YouTube Channel are up!
December, 2009
The New England Consortium of Metabolic Programs has a collection of historical and current videos illustrating vital concepts in metabolic research, screening, and treatment. They are available both here, on the Consortium website, as well as on our newly created YouTube channel!
Transition Resources are Now Available
December, 2009
Transitioning pediatric patients with special health care needs to adult health care can be a challenge for patients and their families, and for their health care providers as well. This section contains transition resources and information for health care professionals and for their patients.
Prenatal Education Resources are Up!
December, 2009
These resources were developed by our Consortium members for prenatal educators to use in teaching expectant parents about newborn screening for metabolic disorders. They include an 11-page Newborn Screening Guide for Prenatal Educators, a Newborn Screening Prenatal Curriculum outlining 10 teaching goals, a Newborn Screening Guide for Parents with easy-to-understand explanations of screening and metabolic disorders, and a Newborn Screening Report Card for parents of newborn babies.
Annual Consortium Meeting - 2009
November, 2009
The Annual Meeting of the New England Consortium of Metabolic Programs took place on Nov 6, 2009, at the Tower Hill Botanic Garden in Boylston, MA. The meeting’s agenda, summary, photos and Powerpoint slideshows are all available here. Additional information about the annual meeting, and about Consortium membership is also available.
Acute Illness Protocols are Online
November, 2009
These emergency protocols, authored by Dr. Harvey Levy, Senior Physician in Medicine/Genetics at Children’s Hospital Boston, are guidelines for the treament of newborns considered to be at risk for serious metabolic defects. These eighteen protocols address metabolic defects in the urea cycle, fatty acid oxidation, and organic acids.
Revised Website is Launched!
October, 2009
The New England Consortium of Metabolic Programs is pleased to announce the launch of it’s revised and updated website here at newenglandconsortium.org. On the new site you’ll find improved design, navigation, and web features, including an easy-to-use search box, A-to-Z index, and clearly organized categories of information for the professionals and families who use our site.
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