Chiari Gear actively supports an awareness act, Ehrick Garion’s Act (a.k.a. Ehrick Garion’s Law) The act will bring about awareness, education and research for Chiari Malformation.
What is Ehrick Garion's Act?
Ehrick Garion's Act is an awareness act created to advocate for people with Chiari Malformation and their families. The goal of the act is to have state and/or federal legislation passed which will require greater education and training of health care professionals to recognize, advise, and treat patients especially children with Chiari, and to eliminate the challenges for Chiari patients to have their disabilities recognized by state and federal agencies.
What will this law do?
This law will protect families who have lost children/spouses/parents due to lack of diagnosis, withholding diagnosis, complications due to delayed diagnosis, medical malpractice due to lack of knowledge of Chiari and related conditions.
Why did Kolya start this initiative?
· 9 year old, Ehrick, died of a brain hemorrhage, because his doctor told his parents,
“It’s nothing. It’s not a life or death situation.”
· 8 year old, Garion, died in his sleep of central sleep apnea,
because his doctor withheld his diagnosis from his parents.
· 23 year old, Delia, died of complications from surgery.
Her father is a doctor and believed that it was nothing.
A Message from the creator:
"I created Ehrick Garion's Act in 2012, officially launching in November of 2012. I've heard story after story (including my own) about the injustices in medical community, academic institutions (from kindergarten to college), government agencies (primarily Social Security), workplace, etc. I knew there had to be legislation to prevent these things from happening. I'm currently getting my degree in Medical Sociology to understand the medical community (how doctors think, how insurances think, etc.). With this information I can advocate more effectively. I wrote a research proposal on Chiari and Mental Fatigue, which was accepted by the Eastern Sociological Society and I presented on it in February of 2014 in Baltimore at their annual conference."
- Kolya Lynne Smith, creator
Want to contact Kolya? You can! Email her at: firstname.lastname@example.org
To learn more and sign up for the mailing list, please go to www.chiariact.com and join the Facebook group.