This coming week Babyfoodsteps is headed to Nashville TN to participate in the American College of Medical Genetics and Genomics conference as a consumer advocate for the Consumer Leadership program that is part of NYMAC.
We are taking with us, our own family’s experience we have had on this metabolic, mitochondrial winding road with genetics but we would love to share your story as well! For some I have spoken with, genetics has given their family hope because it has revealed a treatable condition, for others genetics has offered much frustration as each new round of testing brings little or no answers. No matter your experience, either positive, negative, hopeful or frustrating- WE WANT TO HEAR FROM YOU!
I will be interacting with geneticists, genetic counselors, students in these diciplines and individuals who make policy, implement policy and change policy in the genetics world. I will also be talking with genetic testing companies from all over the country… so if you have a question (general, not specific to only your situation as this is not a diagnositic conference but rather an educational one), PLEASE ASK IT and we will do our best to share it and help you find some answers!
You may submit your comments annonymously or include a name and email if you would prefer a response- we will do our best to get back to you!Emails and names will not be shared with anyone besides the administrators of this blog. By filling out this form, though, you do give us permission to share your story (without identifying information such as names or emails) with others who will be at this conference as well as genetic conferences we attend in the future.
Thank you in advance for sharing your GENETICS STORY with us.