Genetic Manipulation for Individuals with Disabilities: Does CRISPR-Cas9 Provide a Magic Bullet?

AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE & DENTISTRY BY H. BARRY WALDMAN DDS, MPH, PHD, STEVEN P. PERLMAN DDS, MSCD, DHL (HON), RICK RADER, MD, FAAIDD, DHL (HON) AND MATTHEW COOKE, DDS, MD, MPH “In 1972, WABC-TV in New York sent rookie reporter Geraldo Rivera to Staten Island to infiltrate the Willowbrook State School. Robert Kennedy had visited the mental institution in 1966 and declared: ‘Willowbrook State School was not fit even for animals to live […]

Diet & Nutrition: From Babies To Teens

BY JORDAN CAPIZOLA AND LILLIAN DUFFIELD The new year inspires many people to set goals for themselves, especially when it comes to diet and nutrition. People, especially parents, see it as an opportunity to reset their behaviors and develop healthier habits. Parents spend a great deal of time researching ideas and recipes for how to keep their families healthy, but sometimes researching information online can be daunting. It seems like every day there is new […]

A Holiday Cooking Survival Guide: Special Diet Edition

BY ADRIANNA EVANS, MPH While many families are sitting down to enjoy turkey, ham, or another classic holiday dish, these options are not always available to those at the table with some newborn screening conditions. Because some newborn screening conditions impact metabolism, or how the body breaks down and uses food, some conditions require special diets. Food is a central part of the holiday season. When the weather gets cold and families huddle together for […]

Creating A Family History Tree

Much like Kathleen did, families have the ability to trace their family health history. The tree can include everything from information on heredity, diet, work, activities and environment. GENETIC ALLIANCE BY BY CLAIRE MENA Dr. Kathleen Mimnagh, MD was doing a pediatric genetics rotation in medical school when a geneticist noticed her hand as she inserted an IV. He asked her to do a maneuver that stretched her thumb across her palm. Kathleen’s thumb, unlike […]

Breathing Into Transition

GENETIC ALLIANCE • EMPLOYMENT & TRANSITION ANNUAL ISSUE • BY SARAH ROTH CAREGIVERS WHOSE KIDS ARE TRANSITIONING INTO ADULTHOOD EXPRESS HIGH LEVELS OF STRESS. ONE EFFECTIVE TOOL FOR REDUCING STRESS IS THE CULTIVATION OF A MINDFULNESS PRACTICE. Guiding your young adult from pediatric to adult care is no simple task. The healthcare system is fragmented and difficult to navigate. Care is enmeshed in the world beyond the clinic or hospital. And resources for ongoing social […]

Gene Editing And The Future Of Genetic Conditions

GENETIC ALLIANCE BY BY BLAINE ELIAS “Genome-engineered humans are not with us yet. But this is no longer science fiction,” says Jennifer Doudna, speaking at a London TED Talk in September. Doudna, a biologist and science researcher at the University of California, Berkeley, addresses an international audience in order to discuss her latest discovery.“Genome-engineered animals and plants are happening right now,” Doudna continues. “And this puts in front of all of us a huge responsibility:  […]

Breathing Easier at Home

GENETIC ALLIANCE BY HANNAH DIGHTON Reducing the triggers in the home may be the first step to aid in the fight against allergies – control your living space and control your health! According to the Asthma and Allergy Foundation of America, nearly 30% of adults and 40% of children are afflicted with allergies, and these numbers are increasing at an alarming rate. Allergies are one of the leading chronic illnesses in the United States, and […]

Preparing For Next Year’s IEP

GENETIC ALLIANCE BY ROXANNE ROGERS The Individualized education Plan may seem daunting. IF engaged smartly, IEPs can be more useful than stressful, more empowering than disempowering. 5, 4, 3, 2, 1… School’s out for summer! When our children go on vacation, the work doesn’t stop. This time of year can be stressful, and even daunting, for parents of children with special needs. On top of a regular work schedule, we are often tasked with managing […]


GENETIC ALLIANCE BY ADRIANNA EVANS The arrival of the New Year brings with it resolutions of all kinds; people everywhere promise to make the coming year better than the last. Among these resolutions are often promises to be kind, to spend more time with family, to go to the gym – and of course, to stick to a healthy diet. These days, the promise to stick to a diet often involves using websites, social media, […]

Back To School: Have You Covered Your Bases?

GENETIC ALLIANCE BY SHARON ALEXANDER, MPA The Advocacy ATLAS has over 200 tools and resources developed by parents, parent advocacy groups, condition-specific advocacy groups, disability groups and other partners. This time of year can be both exhilarating and challenging for the whole family. Whether returning to school or starting school for the first time, there are a lot of things to do and moving pieces to consider. For children with special healthcare needs and their […]