The Carmen Foundation
“Louie Who…?”
…was my initial response in 2004 during a consultation with our fifth neurologist when, after another exhaustive exam, he suggested that my 80 year old husband, along with Parkinson’s Disease (PD), is probably being challenged by Lewy Body Disease (LBD).
After weeks Googling, I learned much more than I ever wanted to about the myriad of misfolded proteins that are randomly zapping Milton’s neurons with no antidote in sight.
Though Parkinson’s and Alzheimer’s have become household words, Lewy Body Dementias remain under the radar even though they are the second most common form of dementia in the elderly-- affecting over 1.5 million individuals and their caring families—even though the disease has been recognized since the early 1900s while Friederich H. Lewy was studying Parkinson’s Disease.
For the last four years, we have been using our small Carmen Foundation to support the research being conducted at the MassGeneral Institute for Neurodegenerative Disease (MIND) by Drs. Anne Young, Brad Hyman, Alex Kazantsev as well as the Michael J. Fox Foundation and the Lewy Body Disorders Association (LBDA). This intense immersion has given me hope that antidotes are on the horizon to stall, cure and prevent many neurological diseases.
Since the work at MIND focuses on the protein (alpha synuclein) implicated in the dementia found in both Lewy Body disorders (now considered an adjunct of Parkinson’s) as well as Parkinson’s, we hope to partner with other organizations and individuals affected or interested in being part of this 21st Century research.
We are calling this project:
BEYOND THE BLOOD/BRAIN BARRIER: Antidotes for PD and LBD
The human brain is encased in a thick skull to protect it from trauma. It is also defended internally from noxious chemicals and toxins by the blood-brain barrier, an intricate system of impermeable blood vessels that prevents most substances from entering the brain from the bloodstream.
Like the walls of a castle, this system deters the brain’s chemical enemies, but it is unable to distinguish between harmful substances and those that might be therapeutic. The blood-brain barrier is therefore an enormous challenge in the development of treatments for many brain disorders.
The Carmen Foundation is committing $300,000 as a Challenge Grant to MIND and their collaborators around the world to raise another $700,000 to proceed with creating a new class of antidotes using mouse models of PD and LBD.
Why MIND?
MIND researchers, led by Drs. Young and Kazantsev, have had success finding compounds that can cross the blood brain barrier and look to be effective in mouse models of Huntington's disease. Their goal is to replicate this success in LBD and PD.
Please join us in this cutting edge 21st Century philanthropic effort. Each of us can make a difference that will benefit future generations.
Sincerely,
Marjorie Carmen
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March 10, 2008
To: The LBDA
From: The Carmen Foundation
Once again, we are pleased to place our support in the LBDA by enclosing our check in the amount of $50,000. We are confident that our contribution will be used in the best possible manner and therefore, we are not designating funding a specific project.
Observing that the organization’s expansion gives us hope that with more public awareness of Lewy Body disorders, antidotes are closer to being developed.
We request that any projects using our funding will be noted in the following manner: “…Sponsored by The Carmen Foundation, committed to 21st Century Neurological Research and Solutions.”
Our hope is that the association will collaborate with other organizations dedicated to finding solutions for the myriad of neurological issues that continue to plague our ageing population.
Sincerely,
Marjorie Carmen, M.Ed.
Co-Trustee, The Carmen Foundation
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http://www.mghmind.org/support.htm ..Support The MassGeneral Institute for Neurodegenerative Disease
2 comments:
Stella said...
Thank you, Marjorie, for all you do. Also for coming on here while Pauline is caring for her father. You have given us much to consider and work with. Four years later and I am still hearing, "What is Lewy Body?". I suppose It will require a U.S. Senator or a spouse to be afflicted before it sweeps the country for recognition. You have shown that much is being done with a long way to go.
Anonymous said...
Thank you Marjorie!
This is wonderful news! I'm a LBDA volunteer in Boston, MA. I've met you before - in April 2007 during the Neurologist Convention. We have a LBD local support group that has become quite active - we meet monthly in Jamaica Plain, MA. Should you want to work together in upcoming MA events - feel free to contact me. I have a few guests who are 'in the works' to attend our local support group meetings that you may be interested in. Pauline has my email. :) Victoria