El Dorado Hills family pledges up to $1.5 million for Tourette's Syndrome
|Neurology professor Frank Sharp is focused on identifying the cause and finding new treatments for Tourette's Syndrome.|
A couple from El Dorado Hills has agreed to underwrite the majority of funding needed to create a new Tourette's syndrome research and clinical program within the UC Davis M.I.N.D. Institute
Through their nonprofit RDM Positive Impact Foundation, Ron and Darin Mittelstaedt (pronounced MIT-el-stat) are contributing $300,000 per year to the Tourette's syndrome program for as long as five years — potentially totaling $1.5 million. The Mittelstaedts alone fund the foundation. Their donation was prompted by their confidence in the project and, particularly, in Frank Sharp
The ambitious project will include research and clinical components, with a focus on developing blood tests that could distinguish between different types of Tourette's syndrome, as well as identify causes and treatments for different types of the disorder.
Tourette's syndrome is a neurological disorder that produces recurrent “tics,” including rapid eye blinking, grimaces or other involuntary body movements, or uncontrolled grunts or verbal outbursts. The disorder is commonly associated with obsessive-compulsive disorder and attention deficit hyperactivity disorder, and many Tourette's patients encounter severe difficulty in planning and completing tasks, including school work. It is estimated that 200,000 Americans have the most severe form of Tourette's syndrome and as many as one in 100 exhibit milder symptoms.
The RDM Foundation gift, along with a $100,000 grant from the Tourette's Syndrome Association, will augment the salaries of participating researchers. The gifts also will fund psychological testing, data management, blood draws and laboratory supplies.
Sharp designed the project studies and will supervise the data analyses. He says that granting organizations traditionally have been frugal in funding Tourette's syndrome research because of a lack of biological markers for the disorder. But based on prior research he conducted, Sharp believes that blood may reveal previously overlooked clues.
“With microarray processing available at the M.I.N.D. Institute, we will examine every gene in the blood samples we analyze,” said Sharp. “The financial commitment by Ron and Darin Mittelstaedt, which will enable that, is incredible. I've been doing research all my professional life, but I've never before received a grant like this.”
“The Mittelstaedts' gift is a generous, creative way for this highly motivated family to help advance research investigating Tourette's,” said Robert L Hendren, executive director of the M.I.N.D. Institute. “Their support for research and for the M.I.N.D. Institute's mission is truly remarkable, and we are deeply grateful. This way of directed giving is an exciting model for philanthropists to support the development of research in an area of their particular interest.”
The Mittelstaedts' involvement resulted from Ron's participation as a member of the M.I.N.D. Institute board of directors. He was invited to join the board because of his business acumen. Mittelstaedt is founder, chairman and chief executive officer of Waste Connections Inc
The RDM Foundation has supported other philanthropic causes, but Ron became intrigued about the Tourette's syndrome research proposal when he learned during a board meeting that Sharp is the father of a teenage daughter who has the disorder. The girl is about the same age as Mittelstaedt's elder son, Bradley, 14, who also has Tourette's.
“The relationship developed over many meetings and months,” said Mittelstaedt. “I asked Frank to tell me what he needed and how quickly he expected to proceed.” Mittelstaedt specified that any gift the couple made would be predicated on developing a business plan for the project.
“My business beliefs and experiences shaped the funding structure to which I agreed,” Mittelstaedt acknowledged. “Business is about producing results and being accountable, and I believe the nonprofit world should not behave any differently. So before making a commitment, Darin and I needed to know what the measurable deliverables of the project would be.” He requested a business plan showing how the money would be spent, what work would be performed and what results should be expected. Mittelstaedt devised the plan with Sharp and Hendren.
Bradley Mittelstaedt, whose nonverbal body tics are largely controlled with medication, likely will volunteer for the research study even though his father does not expect him to benefit from it.
“The realistic chances that this study might directly help Bradley are low,” concedes Mittelstaedt. Nevertheless, he finds the project compelling. He believes Sharp's understanding of Tourette's transcends the clinical setting and encompasses how it affects social interactions and other functions of day-to-day living.
“Darin and I were drawn to the research study because it will be conducted by an individual who has a deep personal interest. He knows how Tourette's manifests itself in every aspect of the emotional lives of young patients and in the lives of their families,” Mittelstaedt said. “Doctors don't ordinarily see that in a half-hour visit, but Frank Sharp, who lives with it, does. I'm encouraged by the motivation that he will bring to this project.”