The fourth Sunday in July commemorates a little-known holiday called Parents' Day, signed into law by President Bill Clinton in 1994, to "recognize, uplift, and support parents in the rearing of children." To that end, we feature several stories in this issue that illustrate the joys, challenges, and dilemmas parents face in raising children with neurologic conditions.
In "Sick Before Their Time," parents describe their journey to a proper diagnosis for their children affected by adult conditions such as stroke, multiple sclerosis (MS), and sleep apnea. These parents had to follow their instincts and advocate for their children—both before and after diagnosis—since treatments for these conditions are sometimes not uniformly prescribed in children.
Because few clinical trials include children—and when they do, they're limited to those that offer only nominal risk—there are large gaps in our understanding of pediatric treatments. But the prospect of making drugs safer for kids opens up the potential harm to children as research participants, a stubborn ethical conundrum. This catch-22 scenario is one of the reasons we devoted our Clinical Trial Watch column to innovative studies that look at early stages of neurologic disease for people who are genetically at risk for conditions such as amyotrophic lateral sclerosis, Alzheimer's disease, epilepsy, Huntington's disease, MS, or Parkinson's disease.
It is our hope that such clinical trials may be applied to conditions before they manifest themselves with symptoms. Imagine a world in which neurologic disease may be cured in childhood, or even in utero, by shutting down a gene that has been found to trigger its onset later in adult life? Our story, "Signs Before Symptoms," delves into the ethical controversies and potential promise facing parents of children in these most vulnerable populations.
One of my favorite columns, Speak Up, tells the story of a brave mother whose unwillingness to allow polio to compromise her independence inspired her daughter. And a Waiting Room piece showcases the SustainAbility Farm, a nonprofit organization founded to help people with autism and other developmental disabilities with employment. I visited the 45-acre property in Accord, NY, and was delighted to see what Wendy and Gary Kaplan had created for their daughter, Rachel, who has autism. I picked and sampled some of the crops and heard how the Kaplans designed the farm so that Rachel, and others like her, would have a place to work and a sense of purpose.
In Pictures of You, a woman with MS speaks of how dealing with her own disease helps her care for her 97-year-old mother, who has dementia. Our cover story chronicles how Maria Shriver, inspired by her father, commits to fight Alzheimer's disease, helping to launch and support programs to spread awareness and find a cure.
As always, I hope you enjoy these stories and more in this issue, and I want to wish you and yours a happy Father's Day and a wonderful Parents' Day!
Orly Avitzur, MD, MBA, FAAN
Editor-in-Chief
