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Photo of Juliet Acom
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Explain your project idea (2,000 characters)

According to the World Health Organisation, 5% of the world population is affected by a genetic disorder called Sickle Cell Disease (SCD). Currently where I live in Uganda, the focus is on effective management of pain and other infections arising from SCD crises in persons affected by it. However, there are underlying factors were the sufferers and their families need support including stigma, lack of nutritional advice, counseling support for the caregivers, conflict resolution for broken families, education for illiterate and semi illiterate caregivers, new trends in science (medication) - I know this because I am the primary caregiver of an 11year old child living with sickle cell disease. Since on average 7 out of every 10Ugandans own a mobile phone; my idea is to develop a call center that gives 24hour support to care givers on these "underlying factors". A one stop center where care givers can get counseling support, nutrition advice, receive awareness by having their questions instantly answered, be linked to a doctor on call in their area for first aid at a subsidized monthly fee for as long as they subscribe to the database at the call center. Also through the database, we would form support groups for caregivers and patients and carry out periodical sensitisation/awareness exercises especially in the rural areas and for persons who can not afford a counsellor's fee. Also the general public that requires any information about Sickle Cell Disease, prevention, management, treatment and support.

Who are the beneficiaries? (1,000 characters)

The beneficiaries of this idea are persons living with sickle cell disease in Uganda and their care takers / families. Persons of ages from 15 - 60years (can afford a mobile phone). They will receive education, post trauma support through counseling (especially those dealing with death and disability arising from sickle cell), doctor on speed dial, conflict resolution, nutritional advice. The call center would be an information hub for the public who seeks to learn more about sickle cell disease.

How is your idea unique? (1,000 characters)

Currently in Uganda there is no known sickle cell disease call center - there are sickle cell clinics held at health facilities on given days of the week. In some instances the health facilities are overwhelmed by numbers and are a long distance away more so in rural areas. This idea is unique because it saves on transport costs and supports both users with smart phones and those with button phones (old technology). Also a community facing SCD challenges can come together to purchase a cheap shared phone for this purpose to use as a team. Also by having a call center, the idea is to have a team of people who speak a local language besides the official language to help address the illiterate / semi literate communities in what they can best understand. Many health facilities do not have translators at hand and usually rely on patients/staff speaking a similar dialect to pass on the information.

Idea Proposal Stage (choose one)

  • Pilot: I have started to implement the idea as a whole with a first set of real users.

Tell us more about your organization/company (1 sentence and website URL)

The organisation is called R.E.S.T.O.R.E Africa (RESTORE stands for Reach Out, Educate, Share, Team build, Opine, Rebuild, Empower). It is a community based initiative that seeks to educate and economically empower communities affected by chronic diseases and uses sport as a tool for peace and restorative justice. Founded by Juliet Acom and currently operating in Uganda, RESTORE Africa started out as a personal initiative reaching out to parents of children with SCD out of my passion to help.

Expertise in sector

  • 7+ years

Organization Filing Status

  • No, but we are a formal initiative through an accelerator, hub, or other entity.

In 3-4 sentences, tell us the inspiration or story that encouraged you to start this project.

I was motivated by own experience as a single parent raising a son with sickle cell disease. When he was diagonised, i was directed to a health facility for medical support. However along the way I realised that the medical facilities do a wonderful job to manage the sicklers and there is no further support to the caregivers especially counseling and how to deal with stigma from the communities in which they live. I am passionate to see a change in how sickle cell is perceived by the public.

Please explain how your selected topic areas are influenced, in the local context of your project (1,000 characters).

There is a lot of stigma surrounding sickle, a lot of families have broken because of this causing conflict, hatred, resentment, poor self esteem. The idea of a call center and information hub is to help bridge the gap caused by this stigma by sharing information related to SCD with the public and create equal opportunities caregivers and patients by equipping them with the knowledge and skill to manage the condition. We seek to restore peace in families that have been affected by sickle cell especially those split by cultural beliefs surrounding this illness. (There is a belief that it is caused by witchcraft or spread by women yet it is a genetic condition).

Who will work alongside your organization in the project idea? (1,000 characters)

Currently I work with a faith based organisation - called push ministries; we identify these communities during spiritual outreach hospital visits and a team of volunteers follows up with phone calls or social media where applicable. My idea will create a wider platform which will engage telephone companies, network service provider, health facilities, health practitioners, schools, counselors, local leaders, patients, caregivers, volunteers and the public in general all united for a common cause.

Please share some of the top strengths identified in the community which your project will serve (500 characters)

Currently I have the support of 15 volunteers reaching out the communities affected by sickle cell disease. The team is growing. The advantage that this team comes from different parts of Uganda which helps with language barrier. The fact that my idea can be implemented remotely helps reduce on transport costs and challenges met when traveling to rural areas.

Geographic Focus

My idea targets communities affected by sickle cell in Uganda - East Africa.

How many months are required for the project idea? (500 characters)

My target is to reach 3 million persons in communities affected by sickle cell in 24months and have them subscribed to the call center database

Did you submit this idea to our 2017 BridgeBuilder Challenge? (Y/N)

  • No

Attachments (1)

Love, Work and sickle cell.pdf

A short story of my work experience sensitizing communities about sickle cell disease in Nyamirima - Uganda


Join the conversation:

Photo of Vicky S.

Your dedication and commitment to this issue and to the people suffering from Sickle Cell Disease is admirable.

I have a few questions:

Would the doctors and therapists providing counseling be volunteers or would they receive a salary?

Cultural beliefs are very ingrained into the general population’s way of life. Does your initiative plan on doing outreach to the general community in order to educate them on the myths and stigmas of Sickle Cell Disease?

Photo of Juliet Acom

Hello Vicky,

Thank you for taking time to check out my idea. I appreciate your feed back

Currently I work with a team of volunteers who reach out to rural Ugandan communities affected by sickle cell. We work with local health centers to sensitise illiterate and semi illiterate communities as they are the most prone to stigma from cultural related beliefs.
For starters we seek to partner with Doctors and Counselors who can volunteer an hour or 30minutes a day to offer their services, inevitably as the team grows and stable funding sourced we shall take on full time staff to support the human resources.