Dear Friends and Families of the AHC Patient Community:
We want to update you on some exciting news related to our gene editing project.
(more…)
Dear Friends and Families of the AHC Patient Community:
We want to update you on some exciting news related to our gene editing project.
(more…)
“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:
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.
The 12th Symposium will be held in Barcelona, Spain November 14-15, 2024.
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!
Your donations are being put to good use! Multiple projects are currently underway to advance AHC research and ultimately cure AHC. Read a detailed report of current projects being funded by the AHC organizations here:
http://ahckids.org/wp-content/uploads/2023/08/Research_CommunityUpdate_20230808.pdf
AHC is a 1 in a million diagnosis, making it an ultra-rare disease!
Join us as we spread awareness on social media for Rare Disease Day February 28, 2023!
Wish Come True Co. has generously offered to provide free princess videos for people with AHC!
Izzie Duval, founder and owner of Wish Come True Co., understands the complex realities of AHC. As an AHCF volunteer and AHC mom to Dallas, age 4, she is passionate about using her talent and growing business to bring joy to people with AHC and their families.
Sign-ups for videos occur monthly, with a limited amount of spots to ensure that the videos will be completed in a timely fashion. If you miss the sign-up or all the slots are full, you can sign-up the following month. (Please limit one video request per year.)
Free videos will include:
Visit https://www.surveymonkey.com/r/SM2DPNK to sign up for your free video
A note from Izzie: If your warrior is struggling and could use some cheer, feel free to send me an email at wishcometrueco@gmail.com anytime and I will try to fit you in! This is a no-strings-attached opportunity for your AHC warrior. As a professional actress, singer & arts educator, this is the best way I know to give back to our amazing community.
Dr. George gave a great talk on ASO Research back in October.
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!
The AHC foundations are continuing to pursue multiple complementary strategies to develop therapies for AHC. Therapeutic potential is the priority for every research project that we fund. We need research to translate to results: therapeutics that can help our patients.
We are pursuing multiple avenues of research to cover as many bases as possible. With so many disease-causing mutations in AHC, some patients may benefit from certain therapeutic approaches, while others may require a different strategy.
We are continuing to augment our portfolio of promising projects, with a combination of urgency and prudence. Time passes quickly for our children, and we are mindful of the need to move forward quickly, while deploying funds with care.
We believe we are pursuing the best identified therapeutic approaches for AHC, from genetic medicine to pharmaceutical drug screenings. As a community, we continue to work together to defend the future of our patients and loved ones.
You can read details pertaining to each research project here: http://ahckids.org/…/01/2023-01-09-Research-update.pdf
We are on our way to ending AHC!
On November 22, 2014, Whitney (Whit) Mir passed away unexpectedly while vacationing in Florida. Whit was 31 yo and had battled AHC his whole life. This disorder limited his ability to function “normally,” but through nothing less than sheer determination, he learned to ride his bicycle, ski, snowboard, rock climb, and cheer on his favorite team, the Denver Broncos. He also worked at Home Depot.
Whit found AHCF in 2010 and was surprised and happy that he wasn’t alone with AHC. He came to the 2011 Family meeting with his caregiver Rich Lombardo and met many families and other “AHC Kids,” especially creating a bond with several other young men with AHC. In one show of love and support, Whit comforted a fellow AHC friend when he was having a full-body episode by sitting next to him and leaning his arm on top of him to say, “you’re going to be ok”.
He was rarely without his camera, and photography and drawing were among his passions.
Whit was blessed in having friends and family members that accepted him as he was and a community that provided an atmosphere that allowed him to grow as an individual and for that, his family is truly grateful.
Whit had requested that his brain be donated to science so that “they could figure this thing out,” always thinking of others. His wish was granted.