FREQUENTLY ASKED QUESTIONS
Q: What is the mission of the MINDlink Foundation?
A: MINDlink Foundation’s mission is to generate support for the research of Dr. Jeremy Schmahmann in the hope that a cure can be found for spinocerebellar ataxia diseases. By donating to Dr. Schmahmann’s Laboratory through MINDlink, you can help him unlock the enormous promise and potential of the cerebellum and connect it to cures.
Q: Who inspired the creation of the MINDlink Foundation?
A: Monte and Susan Lake created MINDlink because their daughter, Catie Lake, suffers from a rare disorder, spinocerebellar ataxia 17 (SCA 17). Stricken with the crippling effects of this cerebellar-based progressive disease at age 20, losing the ability to speak and rapidly degenerating from physical normality to a wheel chair by the age of 24, Catie’s experience inspired them to raise awareness and drive support for research that will benefit her and literally millions of others with neurological disorders with a cerebellar component.
Q: What are spinocerebellar ataxia diseases?
A: There are at least 36 known types of spinocerebellar ataxia diseases (SCAs), which are rare dominant genetic disorders that result in the atrophy of the cerebellum. They are characterized by the progressive lack of coordination of muscle movements. Victims eventually lose all physical control, have slowed, slurred speech and need assistance performing daily activities. More severe forms of ataxia, such as SCA 17, are also characterized by other symptoms, including dementia and a decline in cognition that impacts emotions, memory, language and problem solving. Among the worst traits of this disease is that there is no way to predict the speed and scope of its progression. Today there are no known cures.
Q: Why does finding a cure for SCA diseases have such potential for unlocking cures for other diseases like ALS (Lou Gehrig’s), Autism, Alzheimer’s, Huntington’s and Parkinson’s?
A: New genetic analyses reveal that the spinocerebellar ataxias may provide clues to neurodegenerative diseases such as Alzheimer’s, Parkinson’s, epilepsy and Huntington’s diseases because they all have clinical similarities to certain ataxias. For example, there are clinical similarities between SCA 17 and Huntington’s; SCA 2 shares similarities with Parkinson’s and has recently been shown to be an important genetic risk factor for ALS; one of the genes for Alzheimer’s can produce ataxia at its earliest manifestations; and the gene for SCA 1 also has been shown to involve Alzheimer’s.
Q: How prevalent are these neurodegenerative diseases?
A: More than six million Americans and their families are affected by neurodegenerative diseases. The emotional, social and financial impact to families is overwhelming. The cost to society now totals in the billions of dollars. This toll will increase exponentially as the incidence of neurodegenerative disorder grows with the aging baby boomer generation. Novel treatments and cures must be discovered before these diseases cripple our health care system. A critical and groundbreaking component of potential cures for interrelated diseases involves cerebellum research. (To learn more, visit MassGeneral Institute for Neurodegenerative Disease (MIND))
Q: Is there any hope of finding a cure?
A: Yes. Dr. Jeremy Schmahmann, Professor of Neurology at Harvard Medical School and neurologist at the Massachusetts General Hospital (MGH) in Boston, is an internationally recognized export on the cerebellum. The new technology of magnetic resonance imaging tractography brings us closer than ever to understanding the human brain itself. Together with an extraordinary team of clinical, neuroimaging and basic science investigators, Dr. Schmahmann’s team is creating a blueprint of the structure and function of the human brain in health and disease, with the real hope of developing effective treatments for devastating neurological disorders.
Q: What has Dr. Schmahmann’s research uncovered so far?
A: Together with colleagues Dr. Schmahmann made the groundbreaking discovery that the cerebellum (the little brain), once thought only to coordinate movement, is essential also for modulating intellect and emotion – with implications for disabling conditions including schizophrenia and autism. His landmark collaborative studies of the connections and pathways of the brain have provided fundamental insights into the nervous system and diseases ranging from epilepsy to Alzheimer’s disease. Working with colleagues at Harvard and in the MGH Ataxia Unit, the MassGeneral Institute for Neurodegenerative Disease, the Martinos Center for Biomedical Imaging, and the Whitehead and Broad Institutes, Dr. Schmahmann’s studies have potential to solve intractable problems of the biology of the neurodegenerative ataxias and related disorders.
Q: Why does Dr. Schmahmann need private funds? As the world’s leading cerebellum expert and Professor of Neurology at Harvard, isn’t he eligible for and able to secure federal funds and grants?
A: Dr. Schmahmann has had years of success securing federal grants and funds from NIH and others. But the vagaries of the grant application processes, the specific and changing agendas of the different funding agencies, the restrictive nature of the funding mechanisms, and the protracted timelines involved in securing this support all limit his ability to pursue his revolutionary research. Your private donation is important because it bypasses these restrictions and will more quickly allow him to secure the long term stability and overall success of this vital research program.
Q: How can I support Dr. Schmahmann’s research and help find a cure for ataxias and other neurodegenerative diseases?
A: Visit the Get Involved page and you can find concrete ways to take action and make a difference for Catie and millions like her. Actions range from donating, to sending an email to friends, to sharing your ideas and stories; and they can all be done easily through the MINDlink foundation Web site. Please note that Mindlink Foundation is a means of generating support for the Laboratory for Neuroanatomy and Cerebellar Neurobiology at Massachusetts General Hospital and all contributions should be made payable to Massachusetts General Hospital/Schmahmann Laboratory. Thank you!