Buckley HS in Buckley, Washington make Krissy Krotzer, 18, who was born with Trisomy 18, Cheerleader for the Day. She is nonverbal, and has limited mobility. But she’s bubbly and not afraid to demand a kiss from her dad. “There’s a lot of things she can’t do, but the one thing she can do is …
Krissy, age 18 , living with Trisomy 18 is Cheerleader for the Day Read More »
Many times, the voices we hear are mother’s voices in the Trisomy 18 community. But our Fathers have an equally important experience with their child, impacted by a Trisomy 18 diagnosis. Bo Smolka, a member of the Trisomy 18 Foundation Board of Directors, wrote this piece after the arrival of his new daughter, Katie who …
One Dad’s Moving Story of Becoming a Trisomy 18 Rainbow Dad Read More »
This year, in the days leading up to Trisomy 18 Awareness Day on March 18th, we asked our amazing supporters what were the Top Things We Wish People Knew about Trisomy 18. Over and over again, you shared what you wished people and other parents knew about having a child with Trisomy 18, and it …
For those of us who have lost a child to Trisomy 18, Mother’s Day can be such a painful day — especially the 1st Mother’s Day after our child is gone. And if we have no other living children, if this loss was the loss of our first and only child, we can wonder if …
Are We Supposed to be Able to Celebrate Mother’s Day? Read More »
The Trisomy 18 Foundation and eighty-seven other Health Advocacy organizations joined together this week to call on Congress to address the significant and life-threatening consequences of their new health care plan for families who rely on critical health care services funded by Medicaid. Our combined efforts with these organizations that represent a range of patients …
Trisomy 18 Foundation with 87 Other Organizations Call on Congress to Protect Medicaid Read More »
At the Trisomy 18 Foundation, we work to educate healthcare professionals who are on the front lines of delivering a Trisomy 18 diagnosis. Last month, our Executive Director Victoria Miller spoke at the National Society of Genetic Counselors Conference in Seattle, Washington. We regularly build relationships with Genetic Counselors who are important allies in helping …
The Trisomy 18 Foundation’s Director Gives Talk at National Conference Read More »
Our new Clinical Literature Resource improves access for Parents who often encounter challenges accessing the relevant medical literature that allows them to fully participate as informed advocates for their child. The Foundation has long advocated with coalition partners for Free Public Access to federally-funded peer-reviewed literature which is usually restricted to a pay-per-article system that …
Improving Access to Medical Literature for Parents and Families Read More »
By Heather Morgan It is important to stop and process the news of Trisomy 18 before making any quick decisions. Maybe it was just this morning. You sat in the doctor’s office after your ultrasound. There had been too many long, awkward silences. You knew that something was wrong. Maybe it’s spina bifida. You’ve heard …
