Here’s what’s happening at The Genesis Foundation For Children.
February 28th – The Rarest Day of The Year Is Rare Disease Day February 28th is Rare Disease Day. “In the United States, a rare disease is defined as a condition that affects fewer than 2,000 people [living] in the U.S. Congress created this definition in the Orphan Drug Act of 1983. Rare diseases became […]
Neve is not your average ten-year-old fourth grader. Although you wouldn’t know it from looking at her, Neve has a rare genetic disorder called Trisomy X. One in 1,000 females have Trisomy X, also known as Triple X. Females usually have two X chromosomes, not three. Those with Trisomy X have symptoms such as anxiety, […]
By Laura Will Reprinted with permission from www.Knowrare.com I enjoy the goal-oriented practice of setting goals. However, I want to approach this year differently. Instead of using self-critical thoughts to guide another transient resolution, such as to lose weight or read more books, I am going deeper and starting from a place of compassion. We […]
By Laura Will Reprinted with permission from www.Knowrare.com It was 3am, and I could not sleep. We had just been told that our 4-month-old son’s brain had “folded wrong” in utero, a rare condition called polymicrogyria, PMG for short. In absolute turmoil over this life altering condition, I picked up my phone to scour the […]
By Laura Will Reprinted with permission from www.Knowrare.com In the weeks after our infant son was diagnosed with a rare brain malformation, I had an identity crisis. All of a sudden, the title of Mom had an unbidden qualifier – a ‘rare’ mom, a ‘special needs’ mom, a ‘courageous’ mom. It was a lifelong placement […]
By Laura Will Reprinted with permission from www.Knowrare.com Is cultivating flexible hope in the face of chronic illness possible? While stretching out my toddler’s stiff hamstrings, his physical therapist looked up at me and gently said, “we’d like to have your son fitted for a wheelchair.” My heart promptly fell into my stomach. I nodded,“okay,” […]
Reposted from Boston Children’s Hospital Posted on January 31, 2022 by Katie Paradis If you’ve tested positive for COVID-19 and need to isolate or quarantine, you may have questions and concerns about what this means for your family, especially young children. (Image: AdobeStock). Parents: If you’ve tested positive for COVID-19 and need to isolate or […]
I wanted to let you know that we exceeded our 2021 year-end campaign goal. Everyone’s donations quickly added up to exceed our goal of $100,000. We couldn’t have done it without such a remarkable donor base. Although the pandemic continues, 2021 saw a return of in-person visits and program attendance at The Feingold Center for Children These lifted the […]
We’re making an impact, so can you. In 2021, The Feingold Center for Children saw 950 patients, that’s a 63% increase versus the year before. Of these patients, approximately 55% of them were given a new diagnosis. Increased Patient Population Our patient population has increased in 2021 despite the pandemic. Next year, we would like […]
Your Daughter Will Never Walk or Talk. Defying the odds, Amy never thought she’d be able to have children. Her pregnancy was high-risk due to her own medical issues. However, she made it through the first trimester of her pregnancy and was ready for an ultrasound at 18 weeks. Amy didn’t expect the doctors at […]