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Hello AHC families! It’s time for the AHC Valentine’s Day card exchange. This started as a way to keep our children connected between family meetings (before social media). All ages can participate! Each child/adult sends a card to all participating. Some send a photo card, handmade card, stickers, or drawing/coloring. To participate, email your child’s name, address, and age to heather@ahckids.org by January 31st. A list of all participating will be emailed out to you by February 2nd.

“The 11th ATP1A3 in Disease Symposium was held in Chicago on October 27-28, 2023, at the Northwestern University Feinberg School of Medicine. The four U.S. foundations jointly hosted the conference (Alternating Hemiplegia of Childhood Foundation, Cure AHC, Hope for Annabel, and For Henry AHC). Additional support for the conference came from the AHC foundations of the United Kingdom, Spain, Germany, and Canada. The Northwestern University Department of Pharmacology provided local support for the conference. The meeting attracted 115 attendees from 14 countries and was presented in person and through a virtual platform.

The theme for the conference, Taking the Next Steps, was intended to encourage speakers and attendees to think about the future. The conference program consisted of four scientific sessions:

  • Disease Natural History

  • Basic Mechanisms / Neurophysiology

  • Therapeutic Advances

  • Quantifying Phenotypes & Clinical Trial Readiness and a poster session.

Attendees were engaged and enthusiastic and left feeling immense progress in the field.

Read the full summary of this meeting from Dr. George and other symposium summaries here.

Read more

The12th Symposium will be held in Barcelona, Spain November 14-15, 2024.

In loving memory of a member of our AHC family, Mason Wayne Bailey. Gone much too soon. We will not forget you. We will continue to fight AHC in honor of you, Mighty Mason.

#together #inlovingmemory #endAHC #cureAHC #inhonorofmason

Details of the service: 
Tuesday, October 10th at 10 am @Faith Church located at 12201 Warwick Dr. Oklahoma City 73162.
The Baileys request something in blue, red, or yellow for floral arrangements in honor of his Mighty Mason logo. You may reach out to Floral 23 in Yukon for services.

Join us next Saturday, October 14, at 12:00 p.m. EST for a live webinar by Brad Thompson, M.A., NCC, LPC-S on Chronic Grief and the Journey to Hope.

Brad will lead a guided discussion exploring the chronic nature of grief as it relates to families raising children with special healthcare needs. This will include the journey to acceptance and challenges to that acceptance. It will also include the importance of finding meaning in our lives as they are, which is the key to living in hope. We will also discuss the challenges to that acceptance and hope.

https://zoom.us/meeting/register/tJUqfu-vrz4oG9x7pEFaivqH7Ypv2i6SOKtf

Dr. Al George joins our research series to discuss his involvement in pursuing a cure or treatment for AHC. He and his team are increasing our understanding of the basic molecular and cellular defects that cause the disease. Secondly, they are exploring the feasibility and potential effectiveness of specific genetic and molecular techniques that could be, one day, therapeutically valuable.

If you missed it you can view it now! https://youtu.be/5G-4JtcPoRs?feature=shared

Subscribe to our YouTube Channel while you are there and check out our playlists with all the most recent research updates and other educational resources!

Alexander Sousa joins our research series to discuss how the application of biological tools that make precise changes in DNA, gene editing, might help cure AHC.

If you missed it you can view it now! https://youtu.be/LLC6qwLnG-w

Subscribe to our YouTube Channel while you are there and check out our playlists with all the most recent research updates and other educational resources!