We have Tof ones too for those of you who know the condition as EA-TEF.
Families have been telling us how they have seen others using these on their FaceBook photo square like you can see below, allowing them to link up.
Ea-Tef awareness Ribbons
I meet Sue Paul when she found me on the internet, over time I became friends with Chris husband and Father but born like me unable to swallow, in the USA. Chris later died from lack of understanding of an adult with ea-tef. Sue and I now work together on idea’s to bring about a change of lack of understanding for adults like Chris and the hope the Children born like us will not go through what we did growing up. Our hope is that Parents take up this idea you see above and fly the flag, allowing the state you live in to be seen by others allowing people to hopefully link up, also bringing awareness, this is our hope, we both get no payment from anything we do from this site or outside it, we are just here to help others. On Sue’s photo above your see a Charity, run by an Adult like Chris and myself and like Sue and myself earns nothing from anything she does to help support Families across the USA.
We have had Families linking up just by seeing that someone else lives in their area.
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