|
| Our History |
|
Since his birth in September 1995, Palmer Clay Richmond has suffered from frequent illnesses, hospitalizations, painful medical procedures and remains with an undiagnosed neurological disorder. For years, his mother Fia desperately explored both traditional and integrative medicine to alleviate her son’s suffering. But she confronted the tragic reality that few effective treatments exist for children disabled by neurological disorders.
Driven by her boundless love for Palmer, Fia Richmond refused to accept futility. In 2000, she and her husband Phillip traveled to Harvard University to meet with Drs. Evan Snyder and Jeffery Macklis, two physician scientists making unprecedented breakthroughs in neuroscience. Using new knowledge about how the brain develops from stem cells, the |
Our Organization
Our Strategy
Our Accomplishments
Our Future
researchers had accomplished in their laboratories a feat previously thought impossible: repairing and regenerating brain tissue itself. For the first time in history, cure of the underlying causes of childhood neurological disorders had become a possibility.
But the scientists needed help. Their research was severely under-funded, slowing translation of their laboratory breakthroughs into clinical treatments. The Richmonds decided to collaborate with the Harvard scientists to found CNS, a nonprofit research foundation dedicated to improving the lives of children with neurological disorders by promoting research focused on brain repair and regeneration. |
|
|
Our Organization
|
| |
The CNS Board of Directors sets organizational direction in consultation with a Scientific Advisory Board and Board of Advisors. Parent Action Committees throughout the United States conduct grassroots fundraising and advocacy in their communities and over the internet.
Our primary goal is to promote development of effective treatments for children with neurological disorders as quickly as possible. Guided by our mission, vision, and core values we do the following:
|
| |
 |
Fund high-quality research focused on brain repair and regeneration. |
| |
|
Sponsor meetings where physicians and scientists can work together |
| |
|
Encourage young scientists to pursue children’s neurological research |
| |
|
Advocate for increased funding for children’s neurological research |
| |
|
Educate families about options for treating their children
|
| |
TOP
|
Our Strategy
|
| |
Focus on Brain Repair and Regeneration.
Leading neuroscientists believe the best hope for children disabled by neurological disorders lies in the emerging science of regenerative medicine, using tools such as stem cells and genetic modification to repair and regenerate damaged brain tissue. Many fine organizations serve our children well by providing support and rehabilitative services. But now that recent scientific breakthroughs have made brain repair possible, an organization is needed to focus on this area of unprecedented promise so that our children may progress beyond the boundaries of currently available therapeutics.
Research and advocacy unconstrained by labels of disease
Just as development of bone marrow transplantation has benefited people suffering from many different types of cancers and blood diseases, so too will development of tools to repair and regenerate brain tissue help children disabled by many different types of neurological disorders. Thus, CNS focuses not on research for any particular condition, but rather development of therapies that will ultimately help children with many different neurological conditions. We do not seek to compete with existing organizations focused on particular disorders but instead to complement their work through collaboration. There is strength in numbers and we hope to bring together many different groups to the common cause of advancing regenerative medicine for children with neurological disorders.
Comprehensive efforts to speed regenerative therapies
Often families are told that the pace of science is beyond control and that it is better for them to accept “reality” rather than pursue progress. In truth, scientific progress does not occur in a vacuum and history is filled with examples of patient advocacy groups bringing about change more quickly than predicted by conventional wisdom. Families of polio victims worked tirelessly with scientists to develop a vaccine that successfully eradicated this devastating condition from the United States. The work of CNS can similarly speed development of regenerative therapies.
Thus, CNS has developed a comprehensive strategy to develop effective regenerative therapies as quickly as possible:
|
| |
|
Increase private and government funding to speed completion of the research needed to move this science from the laboratory to the clinic |
| |
|
Encourage young scientists to pursue children’s neurological research so more innovative minds are working to heal our children |
| |
|
Sponsor scientific forums that hasten progress by helping researchers compare findings and formulate strategy with colleagues around the world |
| |
|
Collaborate with multiple research advocacy groups so that resources are pooled rather than fragmented and research is coordinated rather than duplicated
|
| |
Creativity in Science, Creativity in Fundraising
Developing the science of regenerative medicine to benefit our children is filled with challenges. Chief among them is to raise the funds necessary to reach our ambitious goals. While CNS aggressively pursues traditional fund development strategies such as major gifts, planned giving, and fundraising events, we also have an innovative system for grassroots fundraising and advocacy. Volunteer networks of parents, family, and friends throughout the country work together to raise money and awareness. Whether it is organizing a fundraising dinner, garage sale, or letter-writing campaign, our Parent Action Committees collectively make important contributions to our quest to speed development of regenerative therapies for our children. Knowing full well that raising a special needs child depletes a family’s time and resources, CNS provides concrete ways for volunteers to make a difference regardless of how much time or money they have.
|
| |
TOP
|
Our Accomplishments
|
| |
Since it founding in late 2000, CNS has made remarkable progress in short order: |
| |
| |
|
Creation and expansion of the CNS Board of Directors, Scientific Advisory Board, Board of Advisors, and Parent Action Committees
|
| |
|
Created an online community for parents |
| |
|
Held 7 important workshops with the nation’s top scientists in collaboration with highly ranked academic institutions resulting in new fundable research
|
| |
|
Funded research on 6 very innovative projects with acknowledged scientists working on regenerative medicine
|
| |
|
Cited in 10 peer reviewed articles in top tier prestigious scientific journals |
| |
|
|
| |
TOP
|
Our Future
|
| |
Never before has the future been so bright for children with neurological disorders. But while there is new reason for hope, there is also need for resolve to do the work necessary to make the promise of science come true for our children as quickly as possible. We need your help. No matter who you are or how much time or money you may have, you have the power to help make hope reality for our children. Please join us as we make this unprecedented journey.
|
| |
TOP |
