We are a support organisation registered by the Ministry of Social Protection under department of Social development.
We run with the help of an elected volunteer committee facilitated by member and support partners contributions.
To have a community that values 4 foundational pillars of Advocacy, Inclusion, Acceptance and Independent Living for people living with Down syndrome.
To advocate, educate and create awareness while empowering people living with Down Syndrome, their families, friends and supporters.
Leaving No-one behind.
Who we are...
T21 Families Support Organization (T21 FSO) is a support organization affiliated with the Ministry of Health, Division of Non-Communicable Diseases and Ministry of East Africa Community, Labour & Social Protection.
Our Mission is to advocate, educate and create awareness with regards to Down Syndrome while empowering people living with Down Syndrome, their families and friends. We rely entirely on corporate and private contributions to achieve this.
In the next few months, you will receive a lot of information on how to take care of your baby. This might be overwhelming to the point that you forget to enjoy your baby. Most T21 Families Support Organisation members can attest to this. Our advice, take one day at a time. Seek professional help and do not fear getting 2nd and even 3rd/4th opinion.
When ready to join our support group, we will be ready to welcome you to. Your hand is held by others on a similar journey.
Early intervention programs with a team of therapists and special educators who can treat each child’s specific situation are helpful in managing Down’s syndrome.
To create awareness of down syndrome to the general public and advocate for the rights and responsibilities of people living with Down syndrome.
To partner and be a link between researchers, collaborators, partners, and other stakeholders in developing educational, social and support programs to people living with Down syndrome.
To improve academic and social outcomes of people living with Down syndrome and maximize independence in adulthood.
A little more about us
T21 FSO was started by a group of mothers in 2015 led by Eva Mama Ella as an informal group but went on to be a registered CBO (community-based organisation) in 2018. The organisation has grown over time and is now a second home to over 350 members of which about 50 to 60 only are registered members.
Our whats app group
The WhatsApp group is platform or medium to keep us organised and allows us to stay connected as an organisation as we meet our objectives.
Our key milestones include.
● Growth of the membership from 7 families to over 300 since inception and an increased amplification of caregivers’ voices as the main advocates for change given the inclusion of the DS community. Members are actively engaging in telling their stories while demystifying myths and misconceptions around DS1 and are organized in text and WhatsApp groups for psychosocial support and knowledge sharing. T21 FSO also hosts annual mum-to-mum sessions where the exchange of information & social support happens. The amplification of caregivers’ voices has been seen by an increase in the number of accepted media interviews that were in the past unacceptable due to fear of exposure or the associated stigma. A few can be accessed via links.
● Establishment of an office that acts as a central point for the caregivers to meet and engage and a focal point for medical camp service provision, delivery and distribution of donations and space for technical meetings.
● Employment of one of the mothers @Grace T21 as the Office Administrator in the bid to empower caregivers.
● Establishment of the most active DS social media platforms in Kenya (Followers: Instagram- 524, Twitter – 151 & Facebook – 832 ) that have moved the organizational advocacy agenda and seen an increased awareness of DS in Kenya.
● Annual subsidized medical camps that increase medical intervention for the community and medical professionals’ engagement with the community creating a circle of “friends in the medical field”. The initiative has been lauded by the Beyond Zero campaign championed by Kenya’s First Lady Hon. Margaret Kenyatta. Approximately 150 children are reached annually, and it’s projected that this figure will double annually as a result of the increased awareness of DS.
● Reducing fatalities through routine training of caregivers by medical professionals on critical health matters, e.g., Pulmonary arterial hypertension, ENT & Ophthalmology issues, Gluten/ Lactose intolerance, Obesity, etc.