The EBF3-HADDS Foundation was created to promote awareness, research, and support for a rare genetic syndrome discovered in 2016.
Houston, TX
Joined October 2020
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Save the date for our 4th birthday party! Join us this Saturday, February 25th at 4 CST for a SWEET HADDS Social Circle Zoom session. Don't forget to BYOC (Bring Your Own Cake)!
Join the Zoom party:
us02web.zoom.us/j/7626202547
#haddsrare #haddscommunity
The HADDS Foundation is excited to share information on two new grants: the EFB3 HADDS Medical Funding Program and the Community Awareness Grant. A summary of the programs is below with complete details available at hadds.org/grants
February is HADDS Awareness Month!
HADDS is a rare neurodevelopmental syndrome caused by a mutation in the EBF3 gene on chromosome 10q26.3. Learn here what the term HADDS stands for.
hadds.org/donate
#haddsrare #haddsawareness #EBF3HADDS
ALT February is HADDS Awareness Month! HADDS is a rare neurodevelopmental syndrome caused by a mutation (deletion, missense, frameshift or duplication) in the EBF3 gene on chromosome 10q26.3. The term HADDS stands for Hypotonia, Ataxia, and Delayed Development Syndrome. EBF3-related HADDS generally affects the nervous system, muscle tone, speech, and general development. The syndrome was discovered in 2016 by Dr. Hsiao-Tuan Chao, Dr. Michael Francis Wangler and Dr. Hugo Bellen of Baylor College of Medicine in Houston, TX. The mission of the volunteer-run EBF3 HADDS Foundation is to enhance the lives of individuals with HADDS through research, education, support and advocacy. Help us further our mission by donating to the Foundation during HADDS Awareness Month. All US donations are tax-deductible. https://www.hadds.org/donate #haddsrare #haddsawareness #EBF3HADDS
We just shared a vulnerable new blog post that is likely relatable to parents of children living with HADDS and equally helpful for the family and friends supporting HADDS families that are parenting a child with differing needs.
hadds.org/post/the-longing
#haddsrare #haddslove
Our community's collective advocacy and generosity has enabled the Foundation to have an impactful 4th year! Today we are releasing the 2022 End of Year update that highlights the work we have done this year with your support!
To continue your support: hadds.org/donate
Thank you to all HADDS in Motion 2022 participants, donors and supporters! Our 141 participants from 11 teams walked, ran, biked and stepped 5.259 miles/ 8.464 km and raised U$20.937,00! #HADDSinMotion #HADDS #EBF3
We are excited to welcome three new Board Members to our EBF3 HADDS Foundation! Join us in welcoming Lauren Lynch, OTR/L, Lindsay Marshall, MBA and Fernanda Touso!
We appreciate the continued commitment from existing Board Members! hadds.org/board-of-direc…
#HADDSFoundation
EBF3 HADDS Foundation retweeted
Thank you to the @HADDSFoundation, families, friends, and colleagues who all came together at #DuncanNRI. A special and deeply meaningful journey for all of us. bit.ly/3oMAArB #RareDisease #Autism #ataxia @HoustonChron @TCHResearchNews @bcm_neurosci @bcmgenetics
Thank you to all who attended, volunteered, and spoke at the 2022 EBF3 HADDS International Conference! The sessions were informative and the memories made were priceless. A special thanks to Texas Children's Hospital for allowing us to host the event at NRI. 💚💙
EBF3 HADDS Foundation retweeted
So proud of Vanesa Lerma (@VCLerma) and the team. Poster accepted today at the @ChildNeuroSoc 51st Annual Child Neurology Society Meeting in Cincinnati, OH for their exciting study on EBF3-related conditions. Kudos! #RareDisease #Ataxia #Autism @HADDSFoundation
EBF3 HADDS Foundation retweeted
Are you joining us this July 21-23, 2022 in Houston? We hope so!
If you haven’t already registered for virtual live stream or in-person, make sure to do so before May 20th! Register: hadds.org/2022haddsconferenc…
Are you joining us this July 21-23, 2022 in Houston? We hope so!
If you haven’t already registered for virtual live stream or in-person, make sure to do so before May 20th! Register: hadds.org/2022haddsconferenc…
It has been a busy year for the Foundation and our community. A big Texas size THANK YOU to all that have supported or participated in raising HADDS awareness, fundraising and giving this year!
Check out our 2022 HADDS Impact Report:
hadds.org/_files/ugd/badd80_…
We finished an amazing week of racing and HADDS awareness raising! Total amount raised $17,429! Winners Are: Costume: Kai Sepersaude - HADDS Piggy Bank; Distance: Ryan Sheetz - 22 Miles; HADDS Plaid: Team Portland of DC; Highest Raising: Team Elliott Sheetz raising $5,450!
Carina and Lopes HADDS Love team, we were amazed at your generosity and impressed by your fundraising efforts. Congrats on raising the most money!
Cliffie, your butterfly costume was both beautiful and inspiring! We appreciate you having fun and racing for our HADDS community!
Congratulations to Rich Holmes for taking the the longest total distance award for the HADDS In Motion run! 102 miles is incredible! We are grateful for your ongoing support and enthusiasm!
Prize Deadline Extended to this Wednesday, November 4th at 11:59 PM PST.
#haddsinmotion #haddsplaid #ebf3hadds
We are in the FINAL stretch, and are amazed by our small but mighty international community! So far, 24 teams have raised $17,000!!!
Be sure to use the hashtags and send us your pictures!
charity.gofundme.com/o/en/ca…
#haddsinmotion #haddsplaid #EBF3HADDS
