PMG Awareness Organization

Epilepsy is a condition of the brain causing seizures. A seizure is a disruption of the electrical communication between neurons. Someone is said to have epilepsy if they experience two or more unprovoked seizures separated by at least 24 hours or after one seizure with a high risk for more. To learn more about the basics of Epilepsy, watch this video https://youtu.be/IJ-Swtm2lWE from the Epilepsy Foundation.... REN is kicking off National Epilepsy Awareness Month with a new blog and a contest with Camila Coelho. See more details here: https://www.epilepsy.com//epilepsy-foundation-kicks-nation 65 MILLION: Number of people around the world who have epilepsy. 3.4 MILLION: Number of people in the United States who have epilepsy. 1 IN 26 people in the United States will develop epilepsy at some point in their lifetime. BETWEEN 4 AND 10 OUT OF 1,000: Number of people on earth who live with active seizures at any one time. 150,000: Number of new cases of epilepsy in the United States each year ONE-THIRD: Number of people with epilepsy who live with uncontrollable seizures because existing medications do not work for them. 6 OUT OF 10: Number of people with epilepsy where the cause is unknown.

Happy birthday little turkeys. (Please note, the PMGA Organization may use your photos posted below in future promotional material, on the website, or shared to other social media platforms. If you do NOT wish for your childs/your photo to be used, please indicate so with your comment. Otherwise, posting a photo will indicate consent to use by PMGA, Org.)

Ghosts and Ghouls! Witches and Warlocks! Fairies and Princess Princes and Pumpkins... Show us your creative costumes for our virtual costume parade!

Get ready! Finally, Team PMG Awareness Racing is coming to the East Coast! Back in 2013, PMGA hosted its very first racing event at the Rolex 24 Hours of Daytona! For those that attended, it was a long and grueling event for the team, but they managed to persevere and make it the entire 24 hours! This event was the very first time that PMGA families came together at a race track and little did we know, 7 years later, we would be coming back!! On December 12th, 2020, Tea...Continue reading

"The Community Congress is a membership-based program dedicated to bringing patient organizations, industry leaders, and other rare disease stakeholders together. The Congress is a strategic advisory council, providing advice and insight on urgent policy issues and Foundation programs and initiatives. It is comprised of four working groups that work on self-selected projects to advance policy for rare disease patients." We are honored to be a part of this outstanding organiz...ation, fighting for rare disease recognition and assistance. May our partnership be a fruitful venture for all! https://everylifefoundation.org/partners/

Truly an amazing year! Thank you to all who participated and shared and helped to make this a successful year!

We are so grateful to have formed an alliance with the National CMV Foundation. Many of our children have dual-diagnosis of Congenital CMV and Polymicrogyria. We are so pleased that we will be able to work together with NCMVF on future endeavors.

https://ussaac.org/aac-info/aac-awareness/

PMG Family and Friends. If you participated in the Virtual 5K and have any photos, please tag @Samantha Isaacs OR email your photos/short vidoes to [email protected]

A NEW PARTNERSHIP! Cody has been hard at work making connections with organizations that will help support our families and this is a great one! We are now a partner with the Rare Epilepsy Network :D... Read a little below about the organization and then click the link to read our blog post. https://www.rareepilepsynetwork.org//meet-pmg-awareness-or Rare Epilepsy Network (REN) was born in 2013 with ten rare epilepsy organizations fueled by a Patient-Centered Outcomes Research Institute (PCORI) grant, managed by the Epilepsy Foundation (EF), and singularly focused on a project to build a patient-centered registry. By 2019, REN had grown to 32 organizations, launched a first-of-its-kind rare epilepsy registry, including 41 diseases, and on-boarded 1,500 patients. When the PCORI grant came to a close in Spring 2019, REN members determined there was value in continuing the network, expanding from a single focused project to multiple projects, and improving transparency about REN’s mission, composition, and terms of engagement. As a result, a small transition work group convened to envision the future of REN. In early 2020, REN began anew and is growing with speed. REN is a volunteer network that welcomes all rare epilepsy organizations to come together around research efforts where our collective efforts will improve the lives lived of our individual constituents. REN includes rare epilepsy organizations and broad epilepsy stakeholders committed to this common mission. Meet our Members and Partners here.

The highlights just keep coming. PMGA Org was nominated as a "Great Non-Profit" and received more than 10 reviews (actually 26!) https://greatnonprofits.org//pmg-awareness-organization-in... We are so grateful for the love and support of our PMG family <3

If you or someone you care about has lost a child to stillbirth, miscarriage, SIDS, or any other cause at any point during pregnancy or infancy, please join us in raising awareness this October for Pregnancy and Infant Loss Awareness Month. Tens of thousands of families across the United States are devastated each year by the death of their baby. But the grief of these families and the value of their babies’ lives are very rarely acknowledged. In 1988, US President Ronald Rea...gan declared October as a month to recognize the unique grief of bereaved parents in an effort to demonstrate support to the many families who have suffered such a tragic loss. Promoting awareness of pregnancy and infant loss not only increases the likelihood that grieving families will receive understanding and support, but also results in improved education and prevention efforts which may ultimately reduce the incidence of these tragedies. On October 15th, participate in the International Wave of Light by lighting a candle at 7 pm local time to honor all babies gone too soon. Keep your candle lit for at least one hour to create a continuous wave of light across all time zones covering the entire globe! #NeverBeStill #InfantLoss #PregnancyLoss #Miscarriage #Stillbirth

Hot Off the Presses!!! @Cody Stevens ,President of PMG Awareness Organization, was featured in an outstanding article by Global Genes. This is a great honor as they are a wide community of rare disease networks and we are so grateful for the work Cody has put in!... Please take a moment to read and share and help educate others about the impact of rare diseases like PMG. https://globalgenes.org//rare-leader-cody-stevens-presid/