Statement of Leading Children’s Health, Medical and Advocacy Organizations: Short-Term CHIP Funding Falls Short for Children

Washington, DC—The following is a joint statement from the American Academy of Pediatrics, Children’s Defense Fund, Children’s Dental Health Project, Children’s Hospital Association, Family Voices, First Focus Campaign for Children, March of Dimes and National Association of Pediatric Nurse Practitioners: “Federal funding for the Children’s Health Insurance Program (CHIP) ran out on September 30th. There is a bipartisan agreement to renew CHIP for five years that both chambers of Congress support, and yet the CHIP […]

Resources For Military Families: A Path To Advocacy For Your Child

“Organizations are people, so as you move, conditions change, service options change, and the people that you are working with will change. Always remember this so as you are planning your transition, realize that you are building a new network of resources each time you move.” BY SHELLY L. HUHTANEN Military families are in a continuous mode of transition. Either a parent is training for a deployment, on a deployment, or coming back from a […]


What appeared to be one of the least restrictive settings for Joey – a one-person group home in the community – became the most restrictive for him, because it was most inappropriate for his complex behavioral needs. BY SUE JENNINGS OUR SON, JOEY, AGE 25, IS BIG, STRONG AND HANDSOME WITH A MISCHIEVOUS SENSE OF HUMOR, AND A DUAL DIAGNOSIS OF AUTISM AND MENTAL RETARDATION. EIGHTY PERCENT OF THE TIME, HE IS JOY TO BE […]


Mepsevii (Vestronidase Alfa) is the First Therapy for Progressive and Debilitating Rare Genetic Disease Mucopolysaccharidosis Vii Ultragenyx Pharmaceutical Inc., a biopharmaceutical company focused on the development of novel products for rare and ultra-rare diseases, recently announced that the U.S. Food and Drug Administration (FDA) has approved MEPSEVII™ (vestronidase alfa), the first medicine approved for the treatment of children and adults with Mucopolysaccharidosis VII (MPS VII, Sly syndrome). MEPSEVII is an enzyme replacement therapy designed to […]

Four Things You Should Know Before Deciding on Long-Term Care

Today is a good time for those who haven’t yet reached retirement age to begin considering some key factors related to health scenarios they might face later in life. “The bottom line is none of us knows ahead of time what our health will be in our 60s and beyond,” says Chris Orestis, Executive Vice President of GWG Life ( and author of the books Help on the Way and A Survival Guide to Aging. […]


The Muscular Dystrophy Association is pleased to announce the award of an MDA Venture Philanthropy (MVP) grant totaling $233,200 to Scottsdale, Arizona-based Iron Horse Diagnostics to support development of a prognostic test for ALS. This prognostic Such a test could help improve and accelerate clinical trials and speed the development of life-saving drugs to people with ALS (amyotrophic lateral sclerosis).  MVP is MDA’s drug development program, which is exclusively focused on funding the discovery and […]

October Is Bullying Prevention Month Here Is How You Can Help

October is Bullying Prevention Month as schools and organizations throughout the country are encouraging people to STOMP OUT bullying and cyberbullying. They are hoping to do this through a range of campaigns and events during the month, which aim to change behavior among children and make schools more peaceful places. Bullying is an enormous issue in US schools, with the Bureau of Justice Statistics and the National Center for Education Statistics Institute of Education Sciences […]

An Introduction to Medical Advocacy

By Thea Arnold and Angela Todd “Half of advocacy is persistence.” Thea Arnold Gender roles haven’t changed enough to change the statistic that by and large women are still the caretakers of both their parents and their children. As our parents age and reach the stage of medical intervention, those of us in the ”sandwich generation” are often juggling working full time, raising children, and making sure our parents are safe in their homes and […]

National Down Syndrome Society Launches National Campaign Spotlighting Laws that Prevent Individuals with Down Syndrome from Seeking Careers

The National Down Syndrome Society (NDSS), a human rights organization for all individuals with Down syndrome, will soon bring together community leaders, self-advocates, parents and employers to launch their latest campaign – Law Syndrome. NDSS’ Law Syndrome campaign will help launch October as Down Syndrome Awareness Month and National Disability Employment Awareness Month. Law Syndrome directly addresses the challenges faced by people with Down syndrome who desire to fulfill career goals, get married and live […]

October Is National Audiology Awareness Month

October is National Audiology Awareness Month and the American Academy of Audiology is urging the public to be conscious of hearing health. A recent study by the Lancet commission on dementia, cited nine risk factors for causing dementia and hearing loss was listed as one of the causes. The report also stated that dementia typically starts many years before it is recognized. Hearing impacts the brain and cognitive thinking. One of the factors in maintaining […]