ADNP Kids Research Foundation attends Global Genes Fifth Annual RARE Advocacy Summit:
This past week I was able to attend the Global Genes Fifth Annual RARE Advocacy Summit in Huntington Beach, California. Along with 5 other wonderful ADNP Moms (Abby Z, Angela D, Lenore R, Liliana A, and Penny F), we were one of the largest groups supporting one syndrome.
Global Genes works to bring the RARE disease community together to share best practices, create important introductions, and help catalyze powerful collaborations.
We learned important next steps for taking action in the areas of research, legislation, fundraising, and community support. Core fundamentals and skills to help start, grow and strengthen our nonprofit organization - ADNP Kids Research Foundation. Strategies for building online communities and why they are essential for rare disease awareness. Understanding the power of genetic data and patient involvement for advancing research for our disease. Tools and insights into crafting successful collaborations with researchers, biotech, pharma and the FDA. We made invaluable connections with advocacy leaders with the US government, NIH and FDA that will help us move forward and define and propel our priorities forward. It was educational and inspiring!
To end the Summit, we were able to attend the Global Genes RARE Champions of Hope Award Gala. It was an honor that Global Genes allowed our very own Angela Downing, mother of Alexi, present the Champions of HOPE Award for International Science to our wonderful Neuroscientist Professor Illana Gozes. The night was exciting, emotional and amazing. Professor Gozes came all the way from Tel Aviv University and described new and exciting treatments that she is currently working on that could possibly help our children in the near future. Below you can see photos from the Summit, the Awards and the Gala as well as links to You Tube videos of the events.
We are already planning to attend next year. If you are interested please let me know.
Sandra Sermone, Founder/President ADNP Kids Research Foundation
This past week I was able to attend the Global Genes Fifth Annual RARE Advocacy Summit in Huntington Beach, California. Along with 5 other wonderful ADNP Moms (Abby Z, Angela D, Lenore R, Liliana A, and Penny F), we were one of the largest groups supporting one syndrome.
Global Genes works to bring the RARE disease community together to share best practices, create important introductions, and help catalyze powerful collaborations.
We learned important next steps for taking action in the areas of research, legislation, fundraising, and community support. Core fundamentals and skills to help start, grow and strengthen our nonprofit organization - ADNP Kids Research Foundation. Strategies for building online communities and why they are essential for rare disease awareness. Understanding the power of genetic data and patient involvement for advancing research for our disease. Tools and insights into crafting successful collaborations with researchers, biotech, pharma and the FDA. We made invaluable connections with advocacy leaders with the US government, NIH and FDA that will help us move forward and define and propel our priorities forward. It was educational and inspiring!
To end the Summit, we were able to attend the Global Genes RARE Champions of Hope Award Gala. It was an honor that Global Genes allowed our very own Angela Downing, mother of Alexi, present the Champions of HOPE Award for International Science to our wonderful Neuroscientist Professor Illana Gozes. The night was exciting, emotional and amazing. Professor Gozes came all the way from Tel Aviv University and described new and exciting treatments that she is currently working on that could possibly help our children in the near future. Below you can see photos from the Summit, the Awards and the Gala as well as links to You Tube videos of the events.
We are already planning to attend next year. If you are interested please let me know.
Sandra Sermone, Founder/President ADNP Kids Research Foundation
CLICK ON THE PHOTO BELOW TO SEE
PHOTOS AND VIDEO'S FROM THE EVENT
PHOTOS AND VIDEO'S FROM THE EVENT