Foundation Board Member's Daughter Inspires Him to Go Above and Beyond the Call of Duty

By Adam Modzelesky
EpilepsyUSA staff
Posted: January 25. 2006

On a brisk, sunny November morning, while resting in a secluded grove of orange and yellow-leaved trees, Warren Lammert sits on the concrete steps of a hotel in Virginia and recounts one of the scariest moments of his life – the day his then-8 month old daughter, Sylvie, began having intractable seizures.

The peace and tranquility of the thicket is in sharp contrast to the tale he is telling – one of intensity and unease.

"Sylvie had one seizure in the afternoon and she was taken to the emergency room," Lammert recounted, his eyes fixed on the ground at his feet. "She recovered and the doctors said, ‘It's no big deal having just one seizure. You can take her home.' We did so, but then later she had a series of seizures. She was taken back to the hospital, and then she went into status. I was on a business trip at the time, so I rushed back home, and by the time I was back, that's when she went into status."

The short and choppy nature of Lammert's sentences make it is obvious he is reliving the moment – a moment that would terrify any new parent, as well as incite a desire to do whatever possible to help fix the problem.

"As it became clearer Sylvie faced a very serious, ongoing, probably life-long challenge with epilepsy, in addition to her underlying metabolic disorder – which is a mitochondrial disease – I wanted to not only be a good parent day-to-day, but also invest the energy I have into trying to make a difference in terms of making treatments and therapies available for Sylvie, other kids and people living with epilepsy," Lammert explained.

"To put it simply," Lammert said, "my need to do what I've done was inspired by my desire as a parent to do whatever I can for my daughter – to give her the best life she can have."

Million Dollar Challenge

In May 2003, Lammert approached the Epilepsy Foundation with an incredible offer: the Million Dollar Challenge. For every dollar the Epilepsy Foundation generated in donations targeted at research or the Research Foundation, Lammert matched that dollar up to $1 million. Much to everyone's delight, the challenge was successful and the epilepsy research world found itself $2 million richer.

But Lammert, most pleased with the campaign's success, wasn't about to stop there.

In May 2005, he went back to the Foundation with a new challenge which seeks to raise $2 million against a Lammert family pledge of $1 million.

"I was quite pleased with the reception the first challenge had," Lammert said. "The Foundation and its members really took it up and matched the pledge I made in a fairly short period of time, and we funded some great work through those contributions. But there's so much more that needs to be done, and I felt the need, and fortunately had the resources, to be able to support another round of contributions for these great projects."

All proceeds from the Million Dollar Challenge go to the Epilepsy Research Foundation, which was created in partnership between the Epilepsy Foundation and The Epilepsy Therapy Development Project – of which Lammert is the founder. The Epilepsy Research Foundation is a national non-profit organization that focuses on expediting breakthrough translational research and the commercialization of new epilepsy therapies.

Epilepsy Research Foundation

The Epilepsy Research Foundation, founded in August 2004, was established to support innovative research leading to new insights into a cure for epilepsy. At the time of its inception, leaders in the epilepsy community couldn't have been more optimistic.

"We have never been so close to developing a cure for epilepsy," Eric Hargis, president and CEO of the Epilepsy Foundation, said at the time. "The Epilepsy Research Foundation represents a new opportunity for scientists to build on recent progress in this field, and we are pleased, along with The Epilepsy Therapy Development Project, to facilitate meaningful grants to speed their progress."

In the last year, the Epilepsy Research Foundation awarded $769,000 in new therapy grants. This being the case, Lammert is excited for what the future might hold.

"We've now had about four cycles of funding and have supported a number of investigators and their commercial partners who are working on some very exciting new directions of therapy," he said. "These directions include new drugs or pharmacological therapies, and some very interesting new directions of work in seizure detection and closed loop systems that attempt to detect seizures and respond to seizures with intervention," he said. "There's also the potential for pharmacological intervention based on seizure detection."

Lammert's interest in research isn't limited to pharmacological therapies, either. Epilepsy surgery is of great interest to him, also, and had it been an option for Sylvie, Lammert said he and his wife, Kathy, would have certainly considered it.

"I think it's an option that's not explored enough by people who have a seizure focus – considering the outcome data for surgery," he said. "But it is a tough thing for parents and patients to accept. Having a portion of their brain matter removed, although the outcomes are very good, should be done quite a bit more than it is.

"It's probably the therapeutic area that is least well exploited, relative to its safety and the good outcomes it can deliver for a subset of those with epilepsy," Lammert added.

The success of the Epilepsy Research Foundation, in Lammert's opinion, wouldn't have been possible without the initiative of Eric Hargis, the Epilepsy Foundation's president and CEO. It is he who Lammert credits for bringing the Epilepsy Research Foundation to fruition.

"I had worked together with the parents of several other children affected by epilepsy, and with our daughter's doctor, Orrin Devinsky, [M.D.], who is also an Epilepsy Foundation board member, to create a new organization that was entirely focused on research," Lammert said. "Eric Hargis invited me to come in and learn more about the Epilepsy Foundation and find ways we could partner together to advance the research and therapy agenda. I would really credit Eric with engaging me and these other parents interested in research in this partnership with the Epilepsy Foundation to really try and reach out and develop a much broader partnership – engaging the Epilepsy Foundation, its affiliates and its members in providing more support for research and translational research."

For more information about the Epilepsy Research Foundation's initiatives, visit their website.

A Day in Sylvie Lammert's Life

Today, Sylvie is in third grade and attends a school in Lincoln, Mass. According to Lammert, the school, as well as the kids who attend it, have been "very accepting and, really, pretty much wonderful" in how they've included Sylvie in their daily lives. Despite the fact she's had a few seizures at school, including a generalized one in the school cafeteria, the kids have not shied away from her or treated her differently. Lammert attributes some of this to the efforts of his wife.

"My wife courageously goes every year to talk to the kids in Sylvie's class about epilepsy and about seizures," Lammert said. "So I think she has helped, together with the school, lay a good foundation for the kids to deal with Sylvie's seizures and epilepsy."

These are the types of messages organizations like the Epilepsy Foundation try to disperse, because it is vitally important that children understand the condition before reaching adulthood.

Lammert and his wifetry to do this for Sylvie while at home, too, although they try not to center on it too much.

"We've read kids books on epilepsy, and we've talked to her about her seizures," Lammert said. "Kids have to understand what they can at that stage of life. It is a daily fact of life for her, but it's not something we try to focus our attention on more than we have to."

Being that epilepsy was completely new to the couple when Sylvie was diagnosed, they had no idea what the future held. However, they soon found out the scariest parts of being the parents of a child with epilepsy: the seizures themselves and worrying about Sylvie's social life.

"It's just a brutal thing to see someone you love have to deal with seizures as a part of the basic, daily aspect of their life," Lammert said. "She's a great lover of other people; she's a very warm person. And helping her to have that social dimension in her life and those friendships and relationships, which are what she hears about, is what life is all about.

"So, for new parents of children recently diagnosed with epilepsy, I would suggest they just be their own advocate and educate themselves," Lammert added.

He also stressed the importance of finding the best possible treatment for their child, in particular, possibly seeking out the treatment of an epileptologist rather than a general neurologist. He also recommended parents find a local comprehensive epilepsy center, if possible, as well as visit the following Web sites: http://www.epilepsyfoundation.org and http://www.epilepsy.com.

"Finding an epileptologist is something we didn't really understand at the beginning," Lammert said, "and we had to search around the United States until we were able to find a really wonderful program at NYU where we felt we were getting state-of-the-art care for Sylvie."

Looking Towards the Future

Lammert is the founder of Granite Point Capital, an investment firm based in Boston. Being in the investment field, he's accustomed to analyzing a subject's potential and prospective growth. Therefore, it's reassuring he sees mostly good things in the epilepsy community's future.

"I'm excited about the processes of change I see going on at the Epilepsy Foundation," Lammert said. "The Epilepsy Foundation is making a new commitment to research and translational research and beginning to market that more effectively. It's also working to re-brand itself in a more effective way, and there are a lot of wonderful people involved with the organization. So I'm bullish from that perspective, and I'm also bullish on the partnerships and collaborations the Epilepsy Foundation has established with other organizations I support, including the Epilepsy Therapy Development Project."

On the other hand, Lammert hopes to see improvements in epilepsy funding. Although he notes the National Institutes of Health and federal government funds quite a bit of basic research, he said he'd obviously like to see more.

"Epilepsy isn't as well funded on a per-person-affected basis, and for the number of people who are as seriously impacted as many other diseases," Lammert said. "So, there's certainly more to be done in terms of fighting for our share of the pie in Washington. But I would emphasize that as a private community we can do a great deal more to make research a priority."

It's this latter belief that drives Lammert, a belief that inspires him to fund a second Million Dollar Challenge.

"We need more treatments for this large number of people living with uncontrolled seizures," Lammert said, "and we need people to stand up and make it happen."