HADDS FUNDRAISING EVENT 💚🧬💙

In honour of HADDS Awareness month we are hosting a virtual themed HADDS Awareness bake/educate event to raise funds/awareness for the EBF3 HADDS Foundation.

Koko received her secondary diagnosis of HADDS Syndrome last year. So, we've decided to do a virtual event where we will be discussing our HADDS journey, raising awareness and baking some HADDS themed cookies/cakes in the process.

Hypotonia, Ataxia and  Delayed  Development  Syndrome (HADDS) is a rare neurodevelopmental syndrome caused by a mutation (deletion, missense, frameshift, duplication, etc.) in the EBF3 gene on chromosome 10q26.3. EBF3-related HADDS generally affects the nervous system, muscle tone, speech, and general development.

https://www.justgiving.com/fundraising/emma-clarke80?utm_source=whatsapp&utm_medium=fundraising&utm_content=emma-clarke80&utm_campaign=pfp-whatsapp&utm_term=1839f6db27324e5cbcf5ed4406d88325

If you would like to support the event/foundation by donating, we would be forever grateful. Any donations welcome! All proceeds raised will go directly to the EBF3 HADDS Foundation. The virtual bake/edicate event is next Saturday 20th of Feb. Anyone local to us that would like to purchase HADDS themed bake/educate packages, please donated the fee via the just fiving link and private message me.

With any diagnosis comes alot of mixed emotions. This diagnosis was none the less, however it opened a door to a community of families like ours who are scattered globally. All at different stages in this rare diagnosis journey, which can sometimes be extremely challenging, emotional and lonely.
These amazing people have been nothing but supportive, uplifting and compassionate towards us. We can honestly say we've never felt more at home amoungst them. The HADDS Foundation is an amazing support network to families like ours.

We along with many others in our community stand proud to share, educate and raise awareness to a foundation that is now a huge part of our life. 

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