“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…”

Read more

“Honor your process. It’s okay to not be okay. Then once you go through the stages, what’s next?”

Watch the video here

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.

Complete the module here

An engaging recorded live session where family leaders shared what leadership means to them and how to foster it with others.

Watch the video here

“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?”

Read more

“Love that child, get to the right doctors, and everything else will fall into place.”

Watch the video here

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.

Complete the module here

“I am a mother to three wonderful boys in whom I am well pleased. They are 8, 6, and 4. They are all smart, witty, funny, energetic, loving boys; they are my light and my ‘why.’”

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“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...”

Read more

“I can't overstate how much power is in knowledge. And then you can make better choices for your children, yourself, and your future.”

Watch the video here

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.

Complete the module here

“Five years ago, during my first week at a new job, I received a phone call from my daughter's genetic counselor. "Is this a good time to talk?" I knew that this phone call could bring an end to a three-year search.”

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“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…”

Read more

“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.”

Watch the video here

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.

Complete the module here

“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…”

Read more

“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?”

Read more

“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...”

Read more

“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…”

Read more

“Love that child, get to the right doctors, and everything else will fall into place.”

Watch the video here

“Honor your process. It’s okay to not be okay. Then once you go through the stages, what’s next?”

Watch the video here

An engaging recorded live session where family leaders shared what leadership means to them and how to foster it with others.

Watch the video here

“I can't overstate how much power is in knowledge. And then you can make better choices for your children, yourself, and your future.”

Watch the video here

“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.”

Watch the video here

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.

Complete the module here

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.

Complete the module here

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.

Complete the module here

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.

Complete the module here