“My husband, Adam, and I have two boys, Graham (10) and Dominic (6). Dominic has Dravet Syndrome. It is a rare and severe form of epilepsy that is lifelong and drug resistant…”
“Honor your process. It’s okay to not be okay. Then once you go through the stages, what’s next?”
In this interactive virtual learning module, you will: Recognize who can be a family leader and how and where they demonstrate leadership, identify leadership characteristics and describe your own leadership in the context of being a family leader.
An engaging recorded live session where family leaders shared what leadership means to them and how to foster it with others.
“I am the mom of a 17 year old boy named Parker. Parker was born with a rare genetic disorder called galactosemia. Parker is also visually impaired and has autism…that’s a mouthful, isn’t it?”
“Love that child, get to the right doctors, and everything else will fall into place.”
In this interactive virtual learning module, you will: Understand the importance of giving yourself time to process your experience and find community, recognize how to find information and make medical decisions, iIdentify next steps in your ongoing journey of living with - or searching for - your child's genetic diagnosis.
“We found a gene mutation. It’s called Cowden’s Syndrome. We know it's not right, but we really don’t know what it means.” That statement was supposed to answer our questions and give us some idea of our future. Instead, it told us nothing but a name...”
“I can't overstate how much power is in knowledge. And then you can make better choices for your children, yourself, and your future.”
In this interactive virtual learning module, you will: Recognize best practices for telling your family's story in an interesting and motivating way, identify SMART request techniques for asking for support and/or change, apply best practices and SMART requests techniques to telling your own story.
“Both of my children have the recessive genetic condition Usher syndrome. At first, having 2 children with a genetic disorder that involves multiple sensory losses did not allow for much time to think about anything else…”
“The most important voice in all of this - the people who are making decisions for your children - are the parents, because it's our lived experience.”
In this interactive virtual learning module, you will: Review types of organizations that a parent leader might join - and how to find them, recognize the skills and talents that you bring to groups and how these skills can be utilized and identify best practices for serving on groups.
“My husband, Adam, and I have two boys, Graham (10) and Dominic (6). Dominic has Dravet Syndrome. It is a rare and severe form of epilepsy that is lifelong and drug resistant…”
“I am the mom of a 17 year old boy named Parker. Parker was born with a rare genetic disorder called galactosemia. Parker is also visually impaired and has autism…that’s a mouthful, isn’t it?”
“We found a gene mutation. It’s called Cowden’s Syndrome. We know it's not right, but we really don’t know what it means.” That statement was supposed to answer our questions and give us some idea of our future. Instead, it told us nothing but a name...”
“Both of my children have the recessive genetic condition Usher syndrome. At first, having 2 children with a genetic disorder that involves multiple sensory losses did not allow for much time to think about anything else…”
“Love that child, get to the right doctors, and everything else will fall into place.”
“Honor your process. It’s okay to not be okay. Then once you go through the stages, what’s next?”
An engaging recorded live session where family leaders shared what leadership means to them and how to foster it with others.
“I can't overstate how much power is in knowledge. And then you can make better choices for your children, yourself, and your future.”
“The most important voice in all of this - the people who are making decisions for your children - are the parents, because it's our lived experience.”
In this interactive virtual learning module, you will: Review types of organizations that a parent leader might join - and how to find them, recognize the skills and talents that you bring to groups and how these skills can be utilized and identify best practices for serving on groups.
In this interactive virtual learning module, you will: Recognize best practices for telling your family's story in an interesting and motivating way, identify SMART request techniques for asking for support and/or change, apply best practices and SMART requests techniques to telling your own story.
In this interactive virtual learning module, you will: Understand the importance of giving yourself time to process your experience and find community, recognize how to find information and make medical decisions, iIdentify next steps in your ongoing journey of living with - or searching for - your child's genetic diagnosis.
In this interactive virtual learning module, you will: Recognize who can be a family leader and how and where they demonstrate leadership, identify leadership characteristics and describe your own leadership in the context of being a family leader.