2024 PMG Family Convention Speaker Line-Up

The 2024 PMG Awareness Family Convention is sure to be one you don’t want to miss! We are so excited about this year’s slated speakers. Here is a quick rundown of who will be joining us in Columbus, OH!

Dr. MirzaaDr. Mirzaa is a geneticist and researcher with board certifications in pediatrics, medical genetics, and molecular genetics. The broad goal of her research is to understand the causes, mechanisms, and outcomes of human developmental brain disorders, including brain growth abnormalities (megalencephaly, microcephaly), malformations of cortical development, and associated co-morbidities including autism, epilepsy, and intellectual disability. 

Emily Holl Emily is the Director of The Sibling Support Project, the first national program dedicated to supporting siblings of people with developmental and health concerns. A social worker and sibling, Emily has published research and written in blogs, magazines and books such as “Thicker than Water.” She co-edited “The Sibling Survival Guide: Indispensable Information for Adult Brothers and Sisters of People with Disabilities.” Emily earned a B.A. from the University of Massachusetts, an M.F.A. from Columbia University, and an MSW from Hunter College at the City University of New York.

Chris Ulmer- Chris is the founder of the leading neurodiversity movement, SBSK (Special Books by Special Kids). Chris has interviewed thousands of disabled people with a diversity of diagnoses from across the world. These in-depth interviews have been viewed billions of times across social media. Chris believes that when we take the time to hear someone’s story and view life from their perspective, we learn and grow as humans, making the world a better place. Together Chris and the SBSK community are promoting conversations about acceptance and inclusion around the world.

Robert Hudson and Schuyler Rummel-Hudson- Since the publication of Schuyler’s Monster (St. Martin’s Press, 2008), Robert has presented at book festivals, assistive technology conferences and disability advocacy events, often alongside Schuyler. He currently works for The Arc of Northern Virginia, a nonprofit organization that advocates for individuals with intellectual and developmental disabilities in the Northern Virginia/Washington DC area. He currently serves as the organization’s Community Outreach Associate and was selected in 2023 as the Frank Trippett Community Outreach and Advocacy Fellow. Schuyler Hudson graduated from Plano Texas Senior High School in 2018. She participated in a Project SEARCH internship at Baylor Scott & White Hospital the following year. Schuyler currently serves as a Project Assistant with the Tech for Independent Living team at The Ark of Northern Virginia, where her years of experience with assistive technology guide her in working with the next generation of tech for people with disabilities. She is also working with her father on his next book.

Heather Emory- Heather has dedicated her career to the field of Intellectual and Developmental Disabilities. She has over 20 years of experience working for Disability Services Providers and Care Coordination Organization/Health Homes. She has led various projects that promote person-centered planning and positive health outcomes to improve the quality of life for people with disabilities. Heather is also the mother of a 10-year-old child who has Polymicrogyria. Her son’s journey taught her there is a lot to understand in navigating the complexities of special education. She was encouraged to learn more and how to best advocate. Her years of continuing education have led her to volunteer assisting other families.

Plus some special surprises for the whole family!

If you were at the last convention in California, you had the opportunity to hear from Dr. Mirzaa and be a part of her research. If you weren’t, now is your chance! The PMG Awareness Organization is pleased to announce that, thanks to Dr. Mirzaa and her team, we will be offering you an opportunity to participate in her research study by providing genetic testing at the convention this summer! As our families may be aware, genetic testing can be a hassle – expensive and difficult to get approved by insurance plans. This opportunity is included as part of your registration and there will be no additional fee. More information will be provided during the convention. (Please note: this genetic testing is being provided as a part of Dr. Mirzaa’s research. While it may yield results if there is a genetic cause for your or your loved one’s PMG, it will need to be verified by a geneticist and a neurologist as research results will not be added to medical records.)
We are so excited to hear from these wonderful speakers. Be on the lookout for more exciting convention announcements over the coming weeks!
You DO NOT want to miss this year’s PMG Family Convention- where we will be “Going Beyond” the label of PMG to living a full life with PMG.  Registration is now open, so what are you waiting for?