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These resources are designed to provide participants with the knowledge, tools, and resources that they need to enhance their abilities to serve as leaders within the genetics healthcare delivery system. Resources are available as blog posts, videos, and interactive learning modules. Choose your area of interest below to see the resources for each section: Individual, Family, Community, and Systems.

Your voice is valuable! If you'd like to share your story (via blog or video) to benefit other families of children with a genetic condition, please contact Molly Martzke, Senior Program Manager, at [email protected]


Family Leadership

Individual

Resources for understanding and embracing your own capacity for leadership.

Finding the Win by Sarah Jacobs

“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

Who is a Family Leader? With Jeannette Mejias

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

Watch the video here

Who is a Family Leader?

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

Different Paths: Journeys to Becoming a Family Leader in the Genetics System

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


Family

Resources for navigating a diagnosis and leading within your family.

Rethinking “Normal” by Valerie Colavecchio

“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

Navigating a Genetic Diagnosis with Valerie Colavecchio

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

Watch the video here

Navigating a Genetic Diagnosis

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


Community

Resources for making connections and raising awareness.

More Questions than Answers by Cindy Weber

“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

Telling Your Story with Cindy Weber

“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

Telling Your Story

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


Systems

Resources for making systemic, structural change through working in groups, advocacy, medical research, and more.

Creating Systemic Change Through Communities by Pamela Aasen

“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

Creating Change Through Communities with Pamela Aasen

“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

Creating Change Through Communities

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


Blogs

Finding the Win by Sarah Jacobs

“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

Rethinking “Normal” by Valerie Colavecchio

“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

More Questions than Answers by Cindy Weber

“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

Creating Systemic Change Through Communities by Pamela Aasen

“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


Videos

Navigating a Genetic Diagnosis with Valerie Colavecchio

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

Watch the video here

Who is a Family Leader? With Jeannette Mejias

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

Watch the video here

Different Paths: Journeys to Becoming a Family Leader in the Genetics System

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

Telling Your Story with Cindy Weber

“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

Creating Change Through Communities with Pamela Aasen

“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


Learning Modules

Creating Change Through Communities

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

Telling Your Story

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

Navigating a Genetic Diagnosis

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

Who is a Family Leader?

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


About

The National Genetics Education and Family Support Center (Family Center) provides tools and resources to support family engagement and genetic services.

Contact info

4301 Connecticut Ave NW Suite 404 Washington, DC 20008-2369

[email protected]