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What is Your Family's Relationship with Epilepsy?

  1. Top of page
  2. What is Your Family's Relationship with Epilepsy?
  3. How has Epilepsy Impacted You and Your Family?
  4. Would You Describe Your Wife as “Living Well with Epilepsy” or are There Restrictions That More Commonly Impact her Daily Life?
  5. What Made You Decide to Raise Interest in Epilepsy, Since After All Your Wife had a Quite Normal Life?
  6. As a European MP (member of the Parliament), What Goals would You Like to See Accomplished Related to Epilepsy Care and Research?
  7. In your view, how is epilepsy research funded relative to other neurological diseases in Europe? If less funded, Why do you think that is the case? Also, once you leave office, Is there anyone else to represent epilepsy in Europe?
  8. From Your Experience in Government, How can Epilepsy Gain more Attention and Resources Related to Care and New Treatments?
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My wife Norma was diagnosed with epilepsy after she collapsed when canvassing in my first General Election in 1981. We were a year married at the time and were both in our twenties. She was going door to door with a volunteer when she stopped, looked confused, and dropped to the ground. A relative who is a doctor was canvassing with her and was on hand immediately; she was taken to hospital. The first presumption was that she might be pregnant or exhausted from all the election work.

She later had a second event at home when I switched T.V. channels, which I've often thought contributed to the event, and a third while in hospital for observation. It was decided she had epilepsy and she was started on medication.

What Made You Decide to Raise Interest in Epilepsy, Since After All Your Wife had a Quite Normal Life?

  1. Top of page
  2. What is Your Family's Relationship with Epilepsy?
  3. How has Epilepsy Impacted You and Your Family?
  4. Would You Describe Your Wife as “Living Well with Epilepsy” or are There Restrictions That More Commonly Impact her Daily Life?
  5. What Made You Decide to Raise Interest in Epilepsy, Since After All Your Wife had a Quite Normal Life?
  6. As a European MP (member of the Parliament), What Goals would You Like to See Accomplished Related to Epilepsy Care and Research?
  7. In your view, how is epilepsy research funded relative to other neurological diseases in Europe? If less funded, Why do you think that is the case? Also, once you leave office, Is there anyone else to represent epilepsy in Europe?
  8. From Your Experience in Government, How can Epilepsy Gain more Attention and Resources Related to Care and New Treatments?

When I started in politics, I needed a space for meeting with my constituents. Coincidentally, we found a space at the Irish Epilepsy Association (they have their HQ [headquarters] in my constituency), and I became even more familiar and more concerned about the consequences of and stigma related to people with epilepsy. It was through our association with Epilepsy in Ireland, where Norma is now a member of the board, that I began to take a more proactive role on epilepsy in the European Parliament.

In your view, how is epilepsy research funded relative to other neurological diseases in Europe? If less funded, Why do you think that is the case? Also, once you leave office, Is there anyone else to represent epilepsy in Europe?

  1. Top of page
  2. What is Your Family's Relationship with Epilepsy?
  3. How has Epilepsy Impacted You and Your Family?
  4. Would You Describe Your Wife as “Living Well with Epilepsy” or are There Restrictions That More Commonly Impact her Daily Life?
  5. What Made You Decide to Raise Interest in Epilepsy, Since After All Your Wife had a Quite Normal Life?
  6. As a European MP (member of the Parliament), What Goals would You Like to See Accomplished Related to Epilepsy Care and Research?
  7. In your view, how is epilepsy research funded relative to other neurological diseases in Europe? If less funded, Why do you think that is the case? Also, once you leave office, Is there anyone else to represent epilepsy in Europe?
  8. From Your Experience in Government, How can Epilepsy Gain more Attention and Resources Related to Care and New Treatments?

The European Parliament passed a Declaration on Epilepsy, with one of the biggest parliamentary majorities ever. This was promoted by myself and other MEPs (members of the European Parliament) who had formed an Advocacy Group on Epilepsy. This Declaration and the creation of the Advocacy Group itself helped heighten awareness of the issue within the EU institutions. Partly because of this, there have been promising signs of advancement in epilepsy research funding over the last number of years, and with better funding and coordination there is opportunity for more success.

The EUs primary instrument for funding research and development, the Seventh Research Framework Programme (FP7), has a total budget of over 50 billion Euros. There have been successful epilepsy projects funded through FP7, and this is a valuable way of helping to make real progress in Europe. I am hoping we can build on this in the successor to FP7 over the next few years, and through other EU budget lines.

Since the Written Declaration on Epilepsy was passed by Parliament in September 2011, a call for epilepsy research was included in FP7; this is worth up to €36 million. Through the Parliament's Annual European Epilepsy Day event, which was first launched in February 2011, we continue to raise awareness of epilepsy at the EU level.

Epilepsy research may not receive the same level of funding as other neurological diseases such as Alzheimer's disease and Parkinson's disease; however, with increased awareness I think there is a strong case to get improved levels of funding for epilepsy research.

In addition, for more improved research results there does need to be improved coordination at EU and Member State levels.

From Your Experience in Government, How can Epilepsy Gain more Attention and Resources Related to Care and New Treatments?

  1. Top of page
  2. What is Your Family's Relationship with Epilepsy?
  3. How has Epilepsy Impacted You and Your Family?
  4. Would You Describe Your Wife as “Living Well with Epilepsy” or are There Restrictions That More Commonly Impact her Daily Life?
  5. What Made You Decide to Raise Interest in Epilepsy, Since After All Your Wife had a Quite Normal Life?
  6. As a European MP (member of the Parliament), What Goals would You Like to See Accomplished Related to Epilepsy Care and Research?
  7. In your view, how is epilepsy research funded relative to other neurological diseases in Europe? If less funded, Why do you think that is the case? Also, once you leave office, Is there anyone else to represent epilepsy in Europe?
  8. From Your Experience in Government, How can Epilepsy Gain more Attention and Resources Related to Care and New Treatments?

Network. People need to write to (and not just standard or repeat letters) and call to see their public representatives. Every Parliament should have a “Friends of Epilepsy” group. Those who want to put the issue on the busy agenda of legislators must network, network, network.

Politicians are constantly asked about issues—epilepsy needs to be kept on their agenda as one of those issues, otherwise it will fall out of sight. There is no substitute for wearing out the shoe leather—take time to talk to politicians and political organizations, including their youth wings, Councillors, MPs, and MEPs, and in the U.S., Congressmen, Senators, Mayors, and Governors. The more that people make their case known to those in office the better opportunity there will be to advance the cause of tackling epilepsy.

Epilepsy should be seen as a disease and not a stigma, those who know should take the time to inform their legislators. This is not only true for Europe but also for the rest of the world. Any stigma or ignorance related to epilepsy must be challenged. You can help by taking the time to inform your public representatives and by trying to get them involved. Public representatives are more accessible than many people think.