Educare Initiative
As an organization we believe that every child deserves an opportunity to attend school and be educated to create the future they envision for themselves.
The Educare Project is a movement facilitated by CYC as a way of assisting vulnerable and neglected children with rare diseases who are unable to go to school. Due to problems pertaining to rare diseases most of families and children are faced with several challenges which include socio-economic problems, unemployment of parents/ caregivers, special education problems, and parents who are in correctional services. Poverty is a great barrier to accessing education, some of these children also come from high-risk populations such as those who are also dropouts, pregnant teens, early marriage, and abuse victims.
As part of the project both boys and girls from primary and secondary government schools will be offered financial support through payment of tuition fees for a period of one year. These funds also include stationery and school uniforms.
To kick start off the Educare Project, we organized a stationery drive to raise learning materials for vulnerable and neglected children including those with rare diseases.
Educare Activities
Our stationery Drive was a huge success. We received over 1200 exercise books covering Grades 1 to Upper Six level, for all relevant subject areas. Along with a wide range of stationery such as pencils, glue sticks, sharpeners, pens, chalk, folders, examination pads, book covers, khaki covers, diaries, attendance registration books, school bells, etc, the list goes on.
We are over the moon and extremely grateful and appreciative for all the donations received! And a warm special thank you to: @rankzimbaweofficial @101stationers @bammstat and @gainsboroughstationers for their generous donations towards our project.
To distribute our stationery we organized 50 Hampers, in honor of the #DayoftheAfricanChild. We celebrate this momentous day by advocating for the African child who has a rare disease in collaboration with Prisons Outreach Support.
For African children with a rare disease, the lack of awareness and recognition leads to discrimination and challenges in healthcare and education. Thank you to everyone who helped us make a difference in their lives.
RARE DISEASE AWARENESS CAMPAIGN-DOMBOSHAVA in collaboration with Zimbabwe Women Doctors Association
On the 25th of May 2022, to commemorate Africa Day and our rare disease day we got together with Zimbabwe Women Doctors Association ( ZWDA) to capacitate families and communities for early diagnosis care and social inclusion.
The fundraiser took place at Domboshava and was hosted by ZWDA as a Health Wellness day. We collaborated to raise awareness about rare diseases, create a platform for patients with rare diseases to come forward, educate the community on the existence of rare diseases, and advocate for early diagnosis and healthy living.
How did the fundraiser go?
The day began with presentations on rare disease definition, prevalence, and the different challenges that the families face right from the identification, diagnosis, and treatment options available.
Trudy presented to school children from Heritage School to make them aware of rare diseases.
Patients shared with the participants their journey including the challenges that they face as they live with a lifelong condition and how their families have supported them and the stigma and discrimination that they face in their day-to-day lives.
Speaking here is our new patient’s mother, Amai Takunda ( who lives with a rare disease called anorectal malformation of bladder exstrophy)
We did interviews with a local media company that runs a media house and have a television channel. The interviews were run on their television channel and an article was published in their newspaper which has a wide coverage, and they are also well established. They distribute their newspapers nationwide and their television is available free to air.
Distribution of IEC material, books, t-shirts, and brochures.
The distribution of IEC materials on rare diseases helped to educate the community about the existence of rare diseases as it had information on rare diseases. We distributed the friendship story on rare diseases and brochures with information on rare diseases and our organization.
Different health care providers exhibited and provided information and the services that they offered to the participants and thereby increasing their knowledge on steps to take and avenues to follow. Booklets, pamphlets, and business cards were exchanged, and this provided a good opportunity to network with other stakeholders and move the rare disease awareness agenda
There were free medical health check-ups which included BP checks, BMI, and also sugar levels. A Zumba fitness coach also did a session as people had the chance to have some exercise through dancing. People also participated in mountain climbing and had a tour of the caves. There was also a health talk presentation from the doctors to encourage people to choose a healthy path through improving their diet.
They were cyclists who did a 35km stretch from Chisipite to Domboshava in support of rare disease patients. A raffle ticket sale was also organized to help raise funds for the patients. An auction was also done on cakes and fish and it was very successful.
Overall it was a fantastic day with lots of fun. Our goal was to mobilize and create awareness about rare diseases and we succeeded in doing so. All proceeds raised at the fundraiser were donated to our organization.
C.A.H Awareness Month- Our First CAH Support Group
Launched And Inaugurated
“CAH is not a tragedy…A lack of action is”
Our first ever C.A.H support group launched on the 28th of June 2022 in commemoration of CAH Awareness Month.
The month of June was set aside by the CAH international community to commemorate the patients and families that are living with CAH. Zimbabwe joined the community this year to also raise awareness of CAH and to allow Zimbabwe to go on board in appreciating people living with CAH are human beings that have a right to live their lives to their fullest potential.
The support group was held at Sally Mugabe Children’s Hospital in Harare, Zimbabwe! Our program began with a few videos played about the experiences of other international people living with CAH. Followed by speeches from our local doctors, who presented and shared their knowledge about managing a person living with CAH from home, and guidance from a local pharmacist about how patients can receive their free medication at the hospital and how to take their medication in a safe and controlled way.
At CYC we believe that people living with CAH have the right to health, the right to life, and the right to non-discrimination! Hence, this support group assisted our patients in opening up and sharing their voices, needs, and concerns within their community. Life with CAH can be, should be! – great!
Why start a CAH Support Group?
Our goal for this support group was to raise awareness about CAH in Zimbabwe so that there is reduced discrimination and isolation, and support in terms of financial burden in attending to the needs of our children, who also would like to have access to medical treatment and care for all patients for the life long treatment that they need.
The number of CAH patients in Zimbabwe is unknown but what we do know is that we have families that continue to struggle with CAH. We are currently working with 7 families that are living with CAH. We have lost 3 patients that were living with CAH in the past few years, which speaks to the high mortality of this condition. We hope that as we continue to advocate in such ways for CAH patients we will be able to reduce the deaths and improve the quality of life of patients.
This support group could not have taken place without the support from our international partner, Caring and Living As Neighbours (CLAN) Organisation in Australia. CLAN provided us with funds to start the support group and supplied us with 3 years worth of free CAH-related medication for our patients. In 2022, CAH is still associated with unacceptably high mortality rates in many countries of the world. For this reason, CLAN’s lifesaving donation has made all the difference for the #CAHCommunity in Zimbabwe as this has shown that we can reduce inequities associated with CAH around the world by advocating for change so that #EveryChild enjoys affordable access to the essential medicines, equipment, and healthcare needed to enjoy the highest quality of life possible.
The program ended with a cake cutting session, and a picture competition with our CAH children, along with lunch and drinks to mark the end of the event.
We would like to thank the international #CAHCommunity and its many passionate supporters for coming together to take action and ensure we #LeaveNoChildBehind in the lead-up to 2030. Together, #WeAreCAH and together, we can #BeatNCDs and achieve #CAHequity.
