epilepsysa

Always assisting those with epilepsy!

In Uncategorized on June 15, 2010 at 7:36 am
Dear Reader

 
I hope that you will enjoy our May newsletter as it contains useful information about tax deductions for people with disabilities and new epilepsy devices, which will be of assistance to people with epilepsy. You can also read more about the services and programmes of Epilepsy South Africa, such as training which took place in the Mpumalanga & Limpopo Branch and planned activities for National Epilepsy Week (21 – 27 June 2010). Other articles include our planned advocacy workshop for August 2010, as well as information on ways in which members can become more involved with Epilepsy South Africa. We have included an inspiring story from Johan Schade, a person with epilepsy, showing what people with epilepsy can do and achieve despite living with epilepsy.As winter has now commenced I hope that everybody will look after their health even better. This is especially important for people with epilepsy, as illness and fevers could trigger more seizures.

I thus wish you a warm and cosy winter ahead and look forward to meeting many of our readers at our upcoming events during 2010.

Regards
Noëline de Goede

May E-news Contents:

Training in Dulstroom: Epilepsy South Africa Mpumalanga/Limpopo

Training in Dulstroom: Epilepsy South Africa Mpumalanga/Limpopo

March and April brought a lot of training to our offices – hopefully this will bear fruit in the near future!

Noting the article on the supervisory training conducted at the Gauteng Branch on 16 and 17 March (published in April) – our delegates reported that the management team was fortunate to attend a supervision training course at our Springs regional offices in March that was also attended by other Epilepsy branches. Everyone felt that it was not only a great opportunity for learning, but also for connecting with our colleagues in other regions and discussing ideas and challenges in our field. The majority of our management team returned with renewed energy and started implementing useful ideas in their departments on returning to work.

During the last week in March we hosted a First Aid Training course over a two day period attended by business owners and health care workers in Dullstroom. It was to our advantage that more than 10 of our employees were able to attend the course for FREE!! The course was facilitated by a couple who used to own an ambulance service in the Eastern Cape, now employed by Mopani Pharmacy in Nelspruit. This combination made for some interesting stories, some of them really GORY! From the photos you can tell we all had a good laugh when it came to the trauma board training.

Next in line was the fundraising training presented by the Fundraising Forum which was a fantastic experience for our fundraising team!!

Lastly our Director and Chief Community Developer presented training in Epilepsy Identification and Management for the Department of Social Services. 33 delegates attended and thoroughly enjoyed the course, especially when presented with the opportunity to interview seven of our residents as a practical exercise.

The tiling of the Dullstroom centre is still in progress and we have been very fortunate in receiving a sponsor for 200 bags of tiling cement from Roadex Construction in March.

We can feel the change in season here in Mpumalanga and are preparing for our first two events coming up in May. We hope to make a good impression on our donors at our annual Friends of Epilepsy Tea on 6 May 2010.

Please contact Riette or Elsa at the fundraising and marketing office with any queries on (013) 254-0161.

List of qualifying physical impairment or disability expenditure and criteria for diagnosis of disability – SARS

For example, if a person in a wheelchair buys a hand-held GPS, the cost of the hand-held GPS will not qualify under section 18(1)(d) of the Act even though the expense is in the list. This is so because the hand-held GPS is not directly connected to this person’s disability and hence neither necessarily incurred nor incurred in consequence of the disability. In the case of a person who is, for example, visually impaired the cost of the hand-held GPS may qualify.

Under section 18(1)(d) of the Income Tax Act, 1962 (Act No. 58 of 1962) (the Act), the Commissioner is required to prescribe the qualifying expenses relating to physical impairment or disability with effect from the 2009/10 year of assessment.  The List of qualifying physical impairment or disability expenditure has now been published on the SARS website under http://www.sars.gov.za > Legal & Policy > Publications > Brochures and Guides.

Under the definition of “disability” in section 18(3) of the Act, the Commissioner is also required to prescribe the criteria for the diagnosis of disability.  The criteria for the diagnosis of disability are contained in form ITR-DD – Confirmation of Diagnosis of Disability, which has been published on the SARS website under http://www.sars.gov.za > Legal & Policy > Publications > Forms.

Taxpayers may print the form ITR-DD from the SARS website themselves or go to any SARS branch office where they can print the form ITR-DD for him or her.

For any queries in this regard, either one of the following persons can be contacted:
Koenraad Burger: Tel: (012) 317 2778
Cell: 082 466 4945
e-mail: kburger@sars.gov.za
Nathi Nxele: Tel: (012) 422 5074
Cell: 083 703 9992
e-mail: nnxele@sars.gov.za
Issued on behalf of Legal & Policy

Expenditure prescribed by SARS and which is necessarily incurred and paid for by the taxpayer in consequence of a physical impairment or disability is deductible in terms of section 18 of the Act, subject to certain limitations. The terms “necessarily incurred” and “in consequence of” are not defined in the Act. Therefore, they retain their ordinary dictionary meaning. This means that a prescribed expense does not automatically qualify as a deduction by mere reason of its listing. The expense must also be necessary for the alleviation of the restrictions on a person’s ability to perform daily functions.

My hike with epilepsy for Epilepsy, by Johan Schade

My hike with epilepsy for Epilepsy, by Johan Schade

 My name is Johan Schade and I have lived with epilepsy from a very young age. I have undergone almost every possible treatment to control my seizures, but still experience very bad seizure episodes. My parents did not allow me to grow up as a child with a disability but encouraged me to live a “normal” life, enabling me to compete in many sporting events. I finished school, completed my two years compulsory military service and started a 21-year career with the South African Revenue Service (SARS) in 1987. During my career I caused several motor vehicle accidents and decided after the last one to cut up my driver’s license and never put my hand on a steering wheel again. In May 2009 I was medically boarded.

I am a very keen hiker and I have hiked almost every possible major hiking trail in South Africa. At the end of March 2010 I received news that my father (who lived in an old age home in Zeerust, North West Province) was ill and in financial trouble. Given that I also had a dream to walk the length of the South African coastline to benefit a charity, I decided to hitchhike a roundtrip of 2,800km as a pilot run to see if I would be able to cope.

With R200 in my pocket I started the journey on 11 April 2010 in Port Elizabeth. I was picked up by the staff of a security company and told them my story. After a quick discussion the guards gave me back my “taxi fee” and wished me well on my journey.

I met Eugene next who told me the sad story of his life raised in a foster home. He shared an emotional story of his life and how he was neglected by his parents to the extent that he chose rather not to make contact with them at all. He opened up to me, a total stranger and at the end of the trip in Cradock I realized how fortunate I was to have met this young man who taught me so much in only 90 minutes.

The next people to cross my path were Speelman (an electrician) and Roger Gutzmann who was starting his own company. He gave me a lift to Kroonstad where I spent the night. On 12 April 2010 I met a number of people and when I arrived in Klerksdorp I had to walk about 5km to the Hartebeestfontein / Lichtenburg turnoff. There I met Kallie who took me to Lichtenburg and called his friend asking that he wait for me so that I could travel with him to Zeerust. I hopped out of his vehicle into another taxi and arrived in Zeerust at 12h30.

On Monday 17 April 2010 I made my way back to Port Elizabeth and met a number of people with interesting stories. However, one man (whose name evades me) stands out. I had been standing on the road to Orkney for almost two hours without anybody stopping and did the next best thing by walking over to a black gentleman who stopped to buy a cold drink at a café. When I ask him for a ride he said that while he was going in that direction he could probably only take me a few hundred meters before his damaged bakkie broke down. Even moving a few meters was fine with me since I had experienced a very small seizure earlier and simply wanted to get off the road for a while. It was only when the vehicle started moving that I realized it was so badly damaged that we could hardly hear each other. He dropped me two km further and I walked for about another kilometer before he returned and offered to drive me to Orkney. He simply would not take no for an answer and (with his damaged bakkie) dropped me 20 km further. He even refused money and would only accept my thanks for all his trouble.

Along the road I met many people – Pepe, Tshepo, Josef and more. At 23h00 one night even the SAPS helped me along my way. I met a gentleman in Middelburg who gave me lift to Cradock. He also experienced seizures when under stress and I learnt that he is a true believer in the word of God. We exchanged views on what it means to have a personal relationship with God and always allowing God to give you direction in your life. I pointed out that one should always know who the enemy (Satan) was in your life to protect yourself. He told me that he had been involved with witchcraft and noted how easily one could be drawn into a dark world and how difficult it is to return to the true path. From this discussion I learned that if you are destined to know your enemy God will ask a person to do so, but without his blessing it is better not to do so.

On Tuesday 18 April 2010 at 16h00 I arrived back home and completed 2800 km’s.

In conclusion, this trip made an enormous difference in my life. It opened my eyes to South Africa as a friendly country where people are poor, but willing to genuinely give even when they cannot afford to do so. I learned that each one of us have a “hidden disability”. It may be the loss of a loved one causing a barrier in our life, the fear of rejection, AIDS or epilepsy. Every person can live and cope with such disabilities.

I bring this journey to you because I have a dream to assist in collecting funds for an epilepsy office in Port Elizabeth. I believe that by taking hands we may open doors and unleash potential within ourselves and for others in dire need.

I thank our heavenly Father and everyone who trusted there instincts to allow me into their personal space by giving me a lift when I needed it.

For more information please contact us: (021) 595 4900 or email socdev.no@epilepsy.org.za.
 

“On My Mind:What’s in the Pipeline for Epilepsy Devices”

By Dr Robert Fisher.  The Epilepsy Therapy Project (ETP) hereby grants Requestor permission to use the Material Requested solely in the manner set forth above.

The 2010 Pipeline Conference held in San Francisco 2/25-2/26/2010 provides a window into ongoing research and upcoming possible therapies for epilepsy. The conference was sponsored by the Epilepsy Therapy Project under the direction of Joyce Cramer, with unrestricted educational support from Eisai, Sepracor, UCB, Lundbeck, Pfizer, Upsher-Smith, Cyberonics, Medtronic and an anonymous donor.

Below is a summary of some highlights from the first part of the conference, focusing on devices that work by brain stimulation or direct delivery of drugs or genes to the brain, as well as new approaches to testing in animals before giving treatments to humans. Next month, I will review new drugs in development. Webcasts of the conference will be posted on http://www.epilepsy.com in a few weeks so you can hear all the details.

Vagus Nerve Stimulation: Cyberonics®, the company that manufactures vagus nerve stimulation, is developing on-demand magnet stimulation that will automatically detect a seizure and activate the magnet. It will include a seizure logging feature as a diagnostic tool. The company also is looking at development of novel stimulation parameters. It is hoping to broaden compatibility of the device with MRI, currently limited to a few MRI machines.

Deep Brain Stimulation of Thalamus: I was the principal investigator for a Medtronic®-sponsored trial of deep brain stimulation for epilepsy, called “SANTE,” an acronym for “stimulation of the anterior nucleus of thalamus for epilepsy.” Stimulation proved effective in reducing numbers of partial seizures with or without secondary generalization within 3 months, with further reductions in seizures through 3 years of evaluation. The device is under consideration by the FDA.

Responsive Neurostimulation: Neuropace® has developed an implantable device that can detect seizures and deliver a responsive stimulation to counteract the seizure before it fully develops. The device is entirely implanted into an artificial segment of skull. A study showed efficacy and safety of the system, and benefit was maintained long-term. Further details will be available in the near future, and the device will be under consideration by the FDA.

Seizure Advisory System: NeuroVista® has developed implantable hardware and software that can signal a patient about the likelihood of a seizure in the near future, by use of computer algorithms for analyzing ongoing EEG. Successful studies have been completed in dogs with seizures, and the company is about to enter clinical trials. If seizures can be predicted with some reliability, then the impact of the seizures can be minimized, or treatments initiated at the time of a warning.

Laser Surgery: Visualase® is a company specializing in laser ablation systems, previously used for tumor removal. The laser technology may have applicability for removal of a seizure focus in the brain. Clinical trials are expected to begin in 2010.

Seizure Alert Watches: Two companies, Smart Monitor Corporation® and BioLert®, presented designs of wearable watches that can detect the shaking characteristic of tonic-clonic and tonic seizures. Once a seizure is detected, the watches can send signals to pre-designated cell phones, pagers or other alarm devices. This type of notification may facilitate earlier help during a seizure and peace-of-mind during the quiet times. Clinical trials are underway at Stanford and New York University.

Brain Cooling: The University of Kansas and Flint Hills Scientific® presented a prototype of a probe that could be implanted into brain tissue and cool it to 21°C within 60 seconds. Cooling may provide a reversible way to block brain cell activity, and attenuate seizures.

Local Drug Application to Brain: Orally ingested medicine circulates through the entire brain and body; whereas, local application of a drug to the relatively limited network of brain cells giving rise to seizures might spare the rest of the brain and body from side effects. I performed some of the initial investigations of this technology in laboratory models of epilepsy. Investigators at New York University have carried the idea forward by developing a pump and catheter device to infuse seizure medications under the dura, which is the membrane lining the brain. The drug chosen was muscimol, an analog of the brain’s main inhibitory neurotransmitter, GABA. The technology has shown promise in rodents and primates and is now moving towards clinical trials in people with epilepsy.

“Fuss-Free” EEG: Recording of brain waves (electroencephalogram, EEG) is harmless, but sometimes irritating and upsetting, especially to children. A company called Advanced Neurometrics® has developed an EEG system that can apply electrodes via a comfortable cap, with application time in less than five minutes and without leaving any residue on the hair. Quality of the EEG so obtained is good. Product launch is expected in 2011.

Magnetonanoparticles for MRI: Magnetic resonance imaging (MRI) is a very useful clinical procedure that measures magnetic signals in the brain produced by resonance of atomic structures and converts the results to visible brain images. A company called Epinano® has taken this a step farther and linked tiny magnetic particles to chemicals that bind to particular parts of the brain. This enables MRI to visualize special functional systems in the brain, including possibly those associated with epileptic seizures.

Screening Models: H. Steven White, Ph.D., Director of the Anticonvulsant Drug Development Program at the University of Utah, and Stephen Collins, M.D., Ph.D., President of Neurotherapeutics Pharma®, point out that 13 new antiepileptic drugs have been developed since 1993 and many more are under development. All of these drugs have been developed by screening them in animal models of seizures. Models are better for identifying acute seizure blocking ability then for identifying long-term benefit in chronic epilepsy. Current models also are of limited value for detecting side effects. There is a substantial need for better models and better ways to screen for possibly useful antiepileptic medications.

Translational Models of Epilepsies: SynapCell® is a preclinical contract research organization that develops chronic animal models of epilepsy for the purpose of testing new antiepileptic drugs. These models have been invented and validated in academic research laboratories, but the company makes them conveniently available for testing of possible new antiepileptic compounds.

Dog Epilepsy Model: Dogs develop epilepsy more often than do people, and dogs also require treatment for their epilepsy. In the process of treating dogs, information can be obtained that is useful for treating people with epilepsy. The company CanCog Technologies® does not produce epilepsy in dogs, but links a network of veterinary neurologists in the Toronto, Canada region to study antiepileptic drug treatment in canines.

Genetic Models of Epilepsy: Epilepsy can be caused or made worse by genetic factors. The Texas Institute of Genomic Medicine has developed a library of cell clones with more than 10,000 unique gene variants. This library can be used by researchers to determine the role of individual genes in epilepsy or in action of antiepileptic drugs. It is relevant because 99% of human genes have a mouse counterpart and the Institute has available about 70% of existing mouse genes for study.

Blood Test for Epileptic Tendencies: There is presently no blood test that assists with a diagnosis of epilepsy. A company based at UCLA called NeuroIndx®, collected blood tests from rats before and after induction of status epilepticus. About 100 genes were associated with a risk for subsequent development of epilepsy. This approach may be developed to screen people who are at potential risk for epilepsy after brain injuries.

Gene therapy: Gene therapy is a method of designing a gene to replace a defective gene or to supplement a useful function by inserting a gene. Designer viruses usually are used to carry the fabricated gene into brain cells. A company called Neurologix® has developed a method of gene therapy that increases neuropeptide Y (NPY) in hippocampus. Hippocampus, a structure deep in the temporal lobe of the brain, is often involved in seizures. NPY can reduce the excitability of hippocampus. Studies underway with patients suggest that this gene technology is feasible and safe.

Convention-Enhanced Toxin Delivery: Certain toxins may selectively destroy brain cells involved in producing epilepsy. A company called MedGenesis Therapeutics® has collaborated with Dr. Michael Rogawski of UC Davis to develop a method to infuse a selective toxin into brain, by gently pressurizing fluid through a catheter. This causes the toxin to travel through the brain by convection, which is considerably faster than by passive diffusion. It is being tested in animal models and may have applicability to humans.

Inhaling Your AED: Alternate routes besides oral and intravenous administration are of potential value for treating epilepsy. Medkura® is developing an inhalation device to deliver anti-seizure medications. Inhalation of anesthetic drugs has rapidly controlled seizures in mice, and may become a possible new route of therapy for people.

Adenosine-Releasing Implants: Adenosine is a natural neuromodulator released by brain cells after a seizure. It has an inhibitory effect on local tissue. Legacy Research® developed microparticles with embedded adenosine and implanted them in the brains of rats. Electrical stimulation was applied to artificially induce seizures. Rats with inactive particles not containing adenosine developed seizures within 10 days, but seizures did not develop in rats with implanted adenosine particles. This raises the possibility of drug-impregnated implanted nanoparticles into brains of people to prevent or treat epilepsy.

Conclusion: Treatment of epilepsy is no longer limited to drugs, surgery or the ketogenic diet, but now also includes devices. The vagus nerve stimulator is an existing effective device for treating seizures in some people. Many other devices are in development to prevent, ameliorate, terminate, screen drugs for treatment of, predict or notify of seizures. You cannot get these potential therapies now (except for vagus nerve stimulation), but some of these devices should become available in the next 2-10 years.

* Conflicts of interest for author: Dr. Fisher is a paid consultant for NeuroVista® and SmartMonitor® and has done sponsored research for Medtronic®
 

Ó2003-2010 Epilepsy.com. All rights reserved.

 

National Epilepsy Week 21-27 JUNE

National Epilepsy Week 21-27 JUNE

By Drikie Snyman National Marketing and Public Relations Officer.

With the South African National Epilepsy Week around the corner, you will find us as busy as ants trying to build something bigger than ourselves. The theme for this year is “Sharing Epilepsy!” and powerful communication will flood South Africa to share awareness about the condition.

With cell phones becoming one of the most competitive communication tools, we simply had to use this opportunity for National Epilepsy Week. Should you be interested in becoming part of our group to receive sms text (text only) messages – please send an email with “SMS” in the subject line, and include your name, surname and cell phone number in the body. You are welcome to unsubscribe from this service at any time, and are charged normal cell phone rates for replies, but none for receiving our messages. The email can be sent to marketing.no@epilepsy.org.za

If you have access to social media tools, you are welcome to talk epilepsy! We are currently featured on Facebook, Twitter and have a regular Blog that is updated with relevant news.

Brainstorm

During April Epilepsy South Africa had a wonderful opportunity to form a partnership with the Medical School of the University of Cape Town. This partnership involves the training of five Fourth Year medical students who were taking part in a project which entailed the social aspects of epilepsy, especially seizure management. The students would (in turn) train ten people (community workers, home-based carers and community development workers) who would each train ten people. Thus, 100 people would be trained, eventually result in raising awareness about epilepsy in the community and an opportunity for community members to do epilepsy talks in the community during National Epilepsy Week (June).

Future events in May include our Children’s Week event centred around “Celebrating our abilities”. The event is aimed at an intergenerational event consisting of parents, children and the elderly celebrating the abilities of children with disabilities through activities speaking to the rights of people with disabilities and artistic performances by the children and the elderly.

by Ruth Nugent-Social worker Epilepsy South Africa Western Cape
 

Epilepsy South Africa Membership

Epilepsy South Africa Membership

By Drikie Snyman National Marketing and Public Relations Officer.

Epilepsy South Africa continues to assist people with epilepsy to live to their maximum and true potential. We therefore aim to be of service to people with epilepsy and those affected by the condition. The past year was a busy one filled with many activities, including the development of our National Strategic Plan. This allowed us to specifically look at the future of the organisation and how we can improve our service delivery to the community at large. We will definitely focus on the rights of people with epilepsy again this year, with an emphasis on inclusion issues to build up toward a National Campaign in June when we celebrate National Epilepsy Day on 21 June.

We also aim to build the capacity of families, community members and even companies to support people with epilepsy. We appeal to our members to become more involved in our programmes and will therefore keep you updated on activities within the organisation throughout the year through an appropriate communication channel selected by you.

We suggest your involvement in the following activities:

  • Compilation of Epinews (a bi-annual newsletter by people with epilepsy, for people with epilepsy – to be published by the end of May 2010)
  • Casual Day (a national Fundraising event benefiting a broad spectrum of people with disabilities)
  • Our online newsletter sent monthly to the email address of your choice
  • National Epilepsy Week
  • International Day of People with Disabilities
  • The Annual General Meetings of Epilepsy South Africa and the Epilepsy South Africa Educational Trust

We thank you for your ongoing support and remind you that you may choose to become a member of the National Office or the Branch closest to you. Please contact them for information on the latest membership renewals.

You are a very important part of our team and we would therefore like to stay in contact with you. We value your interest and regular feedback.

 
 

Advocacy and Rights Based Conference in August 2010

Advocacy and Rights Based Conference in August 2010

By Karen Robinson National Social Development Manager

Epilepsy South Africa will be hosting a three day advocacy and rights based conference in August 2010 in Cape Town. The aim of the conference is to empower people with epilepsy, especially young people with epilepsy. Participants will learn how to be self advocates and what civil rights entail. They will also be asked to voice their needs and the challenges that they experience on a daily basis.

It is time for adults and youth with epilepsy to reclaim their place. Highlighting their life stories, their needs and the discrimination and stigma they experience on a daily basis will create awareness and understanding within South Africa. It is time to stop being complacent, take control of our lives and do something positive about the issues affecting us. If you want to make a difference by being an advocate, collaborate with other people with epilepsy and mobilize yourself as national adult and youth epilepsy forums JOIN OUR ADVOCACY and RIGHTS BASED CONFERENCE.

For more information and bookings please contact us:
086 037 4537 or (021) 595 4900 or email socdev.no@epilepsy.org.

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