Saturday, March 15, 2014

We NEED Your Help: Pediatric Brain Mapping Project

Recently, we have developed a working relationship with Children's Neurobiological Solutions Foundation (CNS Foundation). For those unfamiliar with this amazing nonprofit organization, CNS ultimately provides a master key to our success: an established network to connect our organization with the individuals (leaders in medical research) who
can truly make the difference we are striving for. They "facilitate research on the developing brain, provide information and resources to impacted families, and work with other patient advocates to raise public awareness about the importance of pediatric neurological research to the discovery of treatments and cures."

The following request is an important one to not only Global Hydranencephaly Foundation, but other communities across the globe who benefit from continued pediatric neurology advancements and brain research! Please consider joining the latest efforts by our new friends at CNS Foundation in building the Pediatric Brain Mapping Project.

"There are more than 14 million children living in the US with one of more than 600 different neurological conditions. For members of Congress and other policymakers, numbers matter. Help CNS Foundation Shine A Light On An Invisible Population!"

Their goal is to add 10,000 new voices to the Pediatric Brain Mapping Project by the close of Brain Awareness Week on March 16! This project is "an initiative to identify the millions of children and young adults living with one of the more than 600 different pediatric neurological conditions and the organizations that support them. This population is invisible and underrepresented. It’s critical that we make their presence and our organizations known to policy makers, pharmaceutical companies, and all the other funders of science who often ignore the importance of studying the developing brain."

The Map creates a focal point for uniting and mobilizing patient advocacy efforts and will eventually lay the groundwork for a Natural History Database of Pediatric Neurological Diseases that scientists can use to find treatments and cures. 

With the addition of your information to the Map, GHF and other like-minded organizations will gain access to the latest in relevant scientific news and have the opportunity to participate in a virtual workshop series sponsored by CNS. This series will allow networked organizations the opportunity to discuss latest developments in pediatric neurology research and play an active role in working towards future necessary advancements.

So, please consider joining the Brain Mapping Project and being one of those 10,000 new voices needed to make an impact. You can also like CNS Foundation on Facebook or follow them on Twitter to learn more about their efforts! While you're there, follow +Global Hydranencephaly Foundation on Facebook & Twitter as well!

Thank you, in advance, for your support! 

No comments:

Post a Comment

We love to hear from our audience - share your comments with us here or join us on Facebook!