Our Crowdfunding Groups
Although our Momentum campaign has ended, we can still use your support to help us continue the project. Make a gift today to support this documentary.
Thanks to the generous and quick response of our donors to this campaign, we have reached our $20,000 goal! With your help, we would like to see this campaign reach $30,000. Every donation underwrites significant technical aspects of the film and teaching modules. We have just a few days left to accomplish this ambitious goal. Just the simple act of emailing, tweeting, or sharing on Facebook and Twitter expands awareness to every person in your personal and professional networks. Our ultimate goal in this endeavor is to educate the world about X & Y chromosome variations. We credit you all with helping this project take off.
An African Proverb advises, “If you want to go fast, go alone; if you want to go far, go together.” We want to go far!
Often buried in medical literature and shrouded with stigma, X & Y chromosome variations have been called “the quiet epidemic," affecting hundreds of thousands of children and adults. This documentary provides a rare opportunity for donors to shine a light on the lives of children and adults struggling with X & Y chromosome conditions. Their personal stories provide the impetus for this groundbreaking, 90-minute, collaborative documentary effort between Emory University’s eXtraordinarY Clinic and Emmy Award-winning producer-writer, Dianne Steinkraus, whose sister was born with Trisomy X.
What are X & Y Chromosome Variations?
X & Y chromosome variations are random conditions and are not inherited. While some with variations live free of symptoms, others struggle with complex, serious, life-long, medical and mental health challenges affecting every aspect of their lives. These variations aren’t rare, but they’re rarely diagnosed, often creating misunderstanding, misinformation, and misdiagnosis within healthcare systems. Life changing treatment and the support desperately needed rarely exists. Vulnerable children, adults, and their families are too often left to struggle on their own with serious physical and mental health problems that can worsen over time. For those without help, self-injury, violence, and even suicide can occur.
How is Emory involved?
Dr. Sharron Close and the research team at Emory University serve as the lead organization for this project. Emory University’s eXtraordinarY Clinic is home to one of the few multidisciplinary X & Y clinics in the United States providing critical information, cutting-edge research, and medical interventions for patients and families. A recent national patient-centered care study led by Dr. Sharron Close at the eXtraordinarY Clinic identified education and awareness as the most pressing needs surrounding X & Y chromosome conditions.
Dianne Steinkraus, left, Dr. Sharron Close, center, and Dr. Kylie Smith, right, during a 5-day documentary planning workshop
Why your support matters?
Our goal is to bring awareness, improve X & Y diagnosis and patient care, influence health care policy makers, and provide individuals, families, and caretakers with the resources they need to live healthy, productive lives. Your generous gift will help fund this transformational film.
“It’s really difficult finding a doctor who knows anything about sex chromosome variations. We’re just lost.” - Parent of an 11 year old with an X & Y variation
“We have to get past the stigma that accompanies sex chromosome variations. There really aren’t many of us who are willing to speak publicly about it.” - Male with an X & Y variation
“There needs to be a united voice that is loud and clear to tell our story and to counteract current misunderstanding about X & Y conditions.” - Female with an X variation
“We need something big in the area of public awareness. Not like a commercial and not like having famous people talking about us. We’ve all been hiding in the shadows for too long, I think.” - Male with an X & Y variation
“I’ll tell you what my dream is. I want to get this out where everyone will learn about us, like a movie or a big public service piece. I want to help people; especially the kids because they are treated poorly; people just don’t understand. Yeah, I’d like to see a movie about it.” - Male with an X & Y variation
“One of the most effective ways to bring about understanding is by education and awareness. A documentary film that shows candid real-life scenarios will go far to expose and explain what it is like to live with a genetic condition that nobody can see.” - Clinician and researcher who studies persons with X & Y variations
“When I hear your voice and see your world from the inside out, you become real. That's the power of film. Film can reach a thousand places at once with the power to influence minds, affect decision makers, and help create change. It's time for those of us in the X & Y community to be seen and heard from the inside out.” - Dianne Steinkraus, Producer/Writer