Message from the founder

Greetings to you all,

My name is Kibra Kebede, and I am the founder of PPSO-E, an organization that supports Parkinson's patients in Ethiopia. (Parkinson disease) is a brain disorder that is a degenerative and progressive disorder of the central nerves system.  I was diagnosed with Parkinson's at an early age of 30. Being a Parkinson's patient has not been an easy journey. Before the establishment of Parkinson's Patients Support Organization - Ethiopia, there was little to no awareness about Parkinson's disease. Unfortunately, I have bad experience, without knowing my condition, the society around me isolated and discriminated against me. They avoided direct communication with me and would instead approach my family members for any needs. They treated me as if I was good for nothing. Despite having no knowledge of Parkinson's, they attached the symptoms of Parkinson to the work of bad spirit. This believe negatively impacted the life’s of PD patients. Instead of seeking modern medical treatment. , they would prefer going to holy water or traditional healers. In this event that they did not get cured, they would be locked in their homes until death. Realizing the pain and suffering that Parkinson's patients go through, I decided to establish an NGO to reduce their struggles. The Parkinson's Patients Support Organization - Ethiopia (PPSO-E) was established in 2011, with the Goal - quality of life for Parkinson's patients and their caregivers.

Our mission - create opportunities and provide comprehensive support services to PD patients to live a quality life.
 
We plan to achieve this through the implementation of medicine-centered integrated development programs. Because without medicine no quality of life.

Activities

PPSO-E’s activities are grouped into 3 group

  • Awareness raising

  • Capacity building

  • Care and support

The different activities implemented by PPSO-E are given below:

Awareness raising:

The first and core reason for establishing PPSO-E is to make Parkinson's disease known to everybody in Ethiopia. We achieve this through various methods, including broadcasting about PD on government and non-government-owned media, FM radios, daily and seasonal newsletters, and magazines. We also organize meetings and celebrate World Parkinson's Day. Additionally, we produce and distribute reading materials on Parkinson's. While we have made progress in raising awareness, it is not a one-day activity, and we must continue until all people know about Parkinson's, recognize patients, and support them.

Capacity building:

The second major activity is capacity building. Since the name of Parkinson's is new to the people, that is why we broadcasted through awareness activities but, specific groups need to know in detail about it than the general population. Parkinson's patients and caregivers must receive training on Parkinson's disease and its management. Other stakeholders who have a direct or indirect impact on Parkinson's disease and patients should receive training based on their type and degree of involvement.

Care and support:

This third activity provides what is good for survival and better life improvement, such as the availability of Parkinson's drugs free of charge, modern toilet construction, and/or mobile toilet provision, free eye treatment, free eye glass provision, walking apparatus support such as wheelchairs, walkers, and walking sticks, provision of day and night clothes, sugar, cooking oil, and sanitary materials. We also provide consultation services for patients who may face different types of Parkinson's symptoms. In these case they fell panic and need somebody to ask and comforts them, PPSO-E provides the consultation service for our beneficiary and service is going beyond our project area.
 
Physiotherapy and speech therapy and others based on availability of fund.

Unimplemented activities:

Although PPSO-E maximized the achievements, on the mentioned activities, however two very important activities remain unimplemented. These are opening a care center and expansion of PPSO-E to regions. Opening center: We do have a number of member beneficiaries that live in a very difficult condition, some of them without a roof over their head. Some of them do not have family to take care of them, they may have no one close be it friend or relatives, and end up in the premises of someone or church or mosques. The other reason for patients to live miserable life is rejection from a family. PPSO-E believed that these patients need to be cared in care center. Because several reason and, fund shortage  it is planned but remain un implemented. Expansion to regions: Our project area is in Addis Ababa; nevertheless Addis Ababa is nearer to get information on PD. In addition most neurologist were stationed in Addis Ababa. As there is no information about PD and no neurologist to explain about PD, there is a big demand for us in the regions.
Challenges : We do have face a lot of challenges. The major ones are: Shortage of fund: to diversify our existing program or to expand to regions we do have fund shortages. PPSO-E has only one Donor. It requires Donor diversification.
Lack of commitment from the government: PPSO-E works with government at all level. However, they are reluctant, when some issues are raised. For example to establish a center we need a house, if a house is not available, we ask for land. But no positive response. There are a lot of challenges, but the above mentioned challenge can be taken as an example. 
We are working with the most vulnerable group of the society in order to diversify our work and expand to regions we need your help. Please help  us  in order to  help Parkinson disease  patients that live in agony.
Finally I would like to thank our Donor Bread for the World (BFW)for their technical advice and financial support . Thanks although goes to our small scale individual and company Donors.
To my colleges. I appreciate your efforts and commitment in helping Parkinson Patients. I would love to say keep it up and work harder to reach our goal on bringing quality of life.
 
Kibra Kebede,
 
Founder of PPSO -E