HADDS Conference Day 2: Fruit Fly Love

By: Ivette Sepersaude


Last night at the social we were able to connect further with other families. Dr. Chao, Dr. Wangler and some of the researchers joined us as well!! How incredibly amazing for them to have the desire to know our children on a deeper and more personal level. It was not an accident that these healthcare professionals/researchers were chosen for this journey, it was divine intervention!


Today we were able to tour the lab dedicated strictly to HADDS research. We saw fruit flies and mice samples with and without HADDS. The researchers themselves gave us the tour! They thanked us several times for being part of their research. I truly wish they understood what they mean to us, how valuable they are. The best way we can display our gratitude is by supporting their cause, participating in their research and encouraging others to do the same. If you have a loved one with HADDS please consider contacting the clinic in Texas. If you are unable to attend the clinic in person there is always the option of releasing your medical records and providing crucial information for their research. Rest assured that they never share names in their published studies, you will remain private.


Kai in front of the Jan and Dan Duncan Neurological Research Institute

Tomorrow is the last day of the conference! We have already learned so much about the research, genetic makeup and neurological impact of HADDS. It is hard to imagine that there is more to learn. Researchers are learning everyday and graciously share these findings with us regularly. We anxiously await the invaluable information we will receive tomorrow.

Kai writing on the whiteboard

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The EBF3-HADDS Foundation was created to promote awareness, research, and support for a rare genetic syndrome discovered in 2016.

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