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HADDS Conference Day 3: We’re Not Alone

By: Ivette Sepersaude


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Kai at the HADDS Conference.

Today was the wrap of an informative and emotional conference. We leave here with a greater understanding of our child’s condition, renewed hope for the direction of research and most importantly, invaluable connections with other families. There was a common feeling echoed across the conference room, “we are not alone”. Some of us have felt alone for many years, rarely fitting in with local support groups for one reason or another. There is an indescribable feeling of comradery and support within these walls. As we prepare for our trip back home, we feel like we’re leaving something behind. A piece of my little boy lives in that research lab and in the hearts of the team of researchers. In the next year we plan to support the HADDS foundation, educate our local healthcare professionals and continue building connections with our new extended family. Until we meet again Houston!


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Kai with his sister Scarlett

 
 
 

1 Comment


The HADDS Conference Day 3 theme, “We’re Not Alone,” is such an inspiring reminder of the power of community and shared experiences in health journeys. Supporting one another is essential for overall well-being, and just as connection uplifts the spirit, treatments like Hydrafacial Houston help rejuvenate and refresh the skin, boosting confidence.

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The EBF3 HADDS Foundation was created to promote awareness, research, and support for individuals and their families living with EBF3 HADD Syndrome, a genetic syndrome discovered in 2016.

 

The Foundation is a registered 501(c)(3).

EIN: 83-2757964

CONTACT >

E: info@hadds.org

 

Mailing Address:

PO Box 220052

343 S Kirkwood Rd Ste 105

St. Louis, MO 63122

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