About the KISEREM EPILEPSY FOUNDATION
The Kiserem Epilepsy Foundation strives to overcome epilepsy and mental illness in our community. We educate and create awareness in the community to fight stigmatization, provide access to anti-epileptic drugs and healthcare, counsel individuals with epilepsy and their families, and empower them through vocational training.
The Kiserem Epilepsy Foundation is a non-profit organization which is committed to addressing the needs of people living in Kiambu County, Kenya with epilepsy and their communities in a holistic and integrated manner. The Kiserem Epilepsy Foundation works directly with churches, special needs schools, and hospitals, and partner with other organizations to increase the impact on the community. Kiserem Epilepsy Foundation was established in Kiambu County, in 2016 by Fred Kiserem after he was diagnosed with epilepsy while working in Iraq. Upon his return to Kenya, Fred experienced, first hand, the rejection, misinformation and social myths regarding epilepsy that were so ingrained in the community. His amazing work both in Kenya but ALSO as a global advocate was why in 2021 he was offered the global role of "ECA African CEO" from the worldwide Epilepsy Connections Affiliated charity. This gives Fred Kiserem a role in global issues of Epilepsy while also a greater platform to raise awareness of Kenya's issues.
Many people throughout Kenya still perceive epilepsy as witchcraft, demon possession, a worm in the brain, or God’s punishment, and often think it is contagious. Motivated to change these perceptions, he decided to start a foundation to educate the community about epilepsy and empower those who have it.
Epilepsy is a neurological disorder that is characterized by a tendency to have recurrent seizures which manifests in the loss of consciousness, or convulsions, associated with abnormal electrical activity in the brain. Due to lack of education, resources, and finances, only 20% of Kenyans with epilepsy take reliable Anti-Epileptic Drugs (AEDs) and only 1 in 5 people living in Kenya have access to epilepsy medications and treatment (research KEMRI, 2008). This hinders their participation in society as active workers, caretakers, and community members. They are often excluded from school, work, church and other social activities due to stigmatization. Not only do they experience intense isolation, they are also very vulnerable to assault, accident, and abandonment. Having a seizure in an unsafe environment increases the likelihood of drowning, being burnt by fire, road accidents, deep cuts, broken bones,assault,and other bodily injuries.
Recovery from an episode can take several days and requires close monitoring and care. Community support and caregivers are imperative to the recovery process. This condition not only affects the individual, but also takes a heavy toll on family and direct caregivers.
This is why the Kiserem Epilespy Foundation includes programming that targets and assists caregivers and the community as well as the individuals with the disorder. Since 2016, the Kiserem Epilepsy Foundation has reached 10,000 individuals with its progamming.
1. Assist with Medication and Healthcare: 4 out of 5 people living in Kenya with this condition do not have access to Epilepsy medication. One of our Foundation's key mandates is to help people gain access to life-saving medications though financial aide. We also provide transportation assistance to medical services and have a visiting nurse conduct EEG to monitor the condition free of charge. In addition, we advocate for people living in Kenya to receive medical care for Epilepsy.
2. Educate, Monitor, and Counsel: Our staff and volunteers make periodic home visits to educate individuals and families on how best to manage the condition, to assist in any obstacles preventing them from taking their medication or getting other essential services, and to counsel them through the sometimes overwhelming amount of information that comes with this diagnosis. We also have an open door policy at our headquarters and encourage members to drop by to discuss and manage their condition.
3. Raise Awareness in the Community: We hold seminars, classes, and conferences at community venues such as local schools, churches, clinics, etc. to dispell myths and misinformation. We also use local media to spread our mission and tell our stories.
4. Empower and Provide Vocational Training: We assist our members in obtaining resources that would allow them to continue going to school or work; this has included giving out female sanitary napkins, installing glass windows at schools, and providing supplies to classrooms. We aim to provide technical training in tailoring and computer literacy to empower those with epilepsy and their caregivers to better enter and remain in the workforce. We also include basic business skills to encourage members towards self-sufficiency.
5. Fundraise: We run both our own fundraising events plus assist other groups in organising and advertising their own fundraisers. All our fundaiser proceeds go directly to helping those with epilepsy in our community.
about our founder:
Fred Kiserem is from Githurai, Kiambu County in Kenya. While he was living abroad in Iraq from 2011-2015, Fred was diagnosed with epilepsy. He decided to return to Githurai in Kiambu County to surround himself with family and friends. Upon moving back, he experienced first-hand the dismissal and stigma that people with epilepsy in Kenya face. Many people close to him rejected him after learning about his diagnosis. Additionally, Fred realized the lack of medical access in Kiambu county and the increasing population of individuals with epilepsy due to the AIDS/HIV epidemic in the area. Motivated to invoke change in the perceptions of his community and to empower people with epilepsy in Kiambu County, Fred founded the "Kiserem Epilepsy Foundation" in 2017.
He envisioned a program to help spread awareness about epilepsy through education and to empower those suffering from the disease by assisting them with medication, care, and a means to financial independence.
Our founder, Fred Kiserem, believes epilepsy should receive healthcare priority in schools and other learning institutions. To achieve this, parents, relatives, friends, public and private institutions, and NGOs need to get involved in the local activities of the Global Campaign against Epilepsy. The Kiserem Epilepsy Foundation strives to educate these groups and individuals to increase the opportunities that PWE (people with epilepsy) encounter.
He hopes to achieve these goals by working towards these objectives:
a) To build an association in which PWE, their relatives and guardians are empowered and participate in advocacy and lobbying for their rights in achieving dignity and equal opportunities.
b) To create awareness among PWE, their relatives, health workers, opinion leaders and the community so that they can understand epilepsy and are able to support PWE.
c) To build networks and alliances through which the Kiserem Epilepsy Foundation can advocate for the rights of PWE.
d) To assist in the treatment and medical monitoring of PWE and increase their access to basic necessities so that they can strive in their communities
e) On top of our awareness services, our founder, Fred Kiserem is active within the Kenyan community - constantly giving talks and holding Awareness campaigns. By staying active in the community - Fred Kiserem ensures he is on the front line battling for epilepsy in Africa.
Kiserem Awareness Foundation is not affiliated with any Government or Corporate organisation & depends entirely on private donations from within the Community. This makes our fundraising very challenging. We welcome ANY kind of financial support, be it large or small. The funds will be used directly to create awareness in our community about epilepsy. Please contact us if you wish to donate and we will send links for donation via your preferred financial channel.