AHCF

Dystonia Webinar September 24
2025-09-24 12:00 - 13:00 (America/Chicago)
Registration is Now Open for the Dr. Nutan Sharma Webinar!
We are thrilled to announce that registration is now open for our upcoming webinar with Dr. Nutan Sharma, a world-renowned leader in movement disorders.
✨ The webinar is free to attend, but registration is required. When you register, you will immediately receive a confirmation email with the link to join. 👉 https://tinyurl.com/pkjk87pu
Don’t miss this opportunity to learn directly from one of the foremost experts in the field!
#dystoniaawareness #AHCF #CareCantWait

ATP1A3 Symposium - September 15 & 16
2025-09-15 - 2025-09-16
The 13th ATP1A3 in Disease Symposium will take place (virtually) on 15 and 16 September 2025 in Cairns, Australia, in conjunction with the 17th International Meeting on P-Type ATPases in Health & Disease

The Program of the 13th Symposium is set up to allow speakers and participants from Australia and Asia Pacific , but also from all other parts of the world to join live or see the recorded sessions soon after the end of the streaming. There are two joint sessions with the 17th P-Type ATPase meeting that will be live-streamed from Cairns (15 Sep, 18:00-19:30 AEST and 16 Sep, 18:00-20:00 AEST). Here, the time schedule of the Symposium. Warm welcome to delegates joining us virtually for the Symposium alone, and to those joining in-person in Cairns, Australia!Registration
To participate in the 13th Symposium, you need to register on the site of the Conference https://iupab.org/atpase-conference-registration/. Early bird registration deadline is 25 July 2025.

Updated Program NEW
Invited Speakers NEW
If you have any issues or questions regarding registration and abstract submission, please email ronald.clarke@sydney.edu.au or melody.li@florey.edu.au

Time is Running Out! Family Meeting 2025
2025-06-19 08:00 - 2025-06-21 17:00 (America/New_York)
Last chance! Don’t miss the opportunity to meet with the expert AHC community of providers and parents on June 19, 2025. We have researchers, treating physicians, family support and more all speaking on the latest information, and helpful tips and tricks, regarding AHC. Please don’t miss this opportunity to spend time with other AHC parents, and have your kids play or simply hang out with other AHC kids and adults. Moreover, it’s the AHC Foundation’s 30th Anniversary and we are going all out to make this the best Family Meeting yet! Join us!
Meeting Info & Registration Link

Family Fun in Cincinnati: A Perfect Getaway!
2025-03-31 08:00 - 17:00 (America/New_York)
Looking for the perfect family vacation? Cincinnati is a hidden gem packed with unforgettable experiences for kids and parents alike!
Explore & Learn – From hands-on exhibits at the Cincinnati Museum Center to the wonders of the Newport Aquarium, every day is an adventure!
Outdoor Fun – Take in the stunning riverfront at Smale Park, ride the Carol Ann’s Carousel, or watch the world go by on a BB Riverboat Cruise. Kid-Approved Eats – Enjoy local favorites like Skyline Chili or grab a sweet treat at Graeter’s Ice Cream! Sports & Entertainment – Catch a Reds game, cheer on FC Cincinnati, or explore the city’s vibrant arts scene. No matter what your family loves, Cincinnati is full of adventure, discovery, and joy! Have you taken a family trip here? Tell us your favorite Cincinnati memories! www.ahckids.org#AHCFamilyMeeting #KidFriendlyCincinnati #ExploreOhio
See less

Support Group for AHC, Monthly Family Circle
2024-09-28 14:00 - 15:00 (America/New_York)
Join us for our next AHCF Family Circle on Saturday, September 28th at 11am PST/ 1pm CST/ 2pm EST. This is a support group for parents of individuals with AHC. Share your challenges and joys in this informal setting. Connect with others on this journey! If you have questions, please email Heather Gates at Heather@ahckids.org. We look forward to seeing you.

Join Zoom Meeting: https://us02web.zoom.us/j/85227963024…

Sign up for text message reminders for AHCF Family Circle at: https://www.remind.com/join/familyahc?utm_medium=ios

Join the Freedom Run on July 6
2024-07-06 | Edinburg Municipal Park, 714 S. Raul Longoria, Edinburg, TX, 78504, United States
A 4th of July run for a cure benefiting Alternating Hemiplegia of Childhood Foundation.

Empowered Parenting: Thriving as a Single Parent Raising a Rare Disease Child
2024-06-27 19:00 - 20:05 (Asia/Dubai)
The National Organization for Rare Disorders (NORD) invites you to join us for a comprehensive, supportive, and closed-door discussion about raising a rare disease child or children as a single parent.
Date: Thursday, June 27, 2024
Time: 7:00 p.m. – 8:05 p.m. ET
Location: Virtual via Zoom
You will hear from single rare parents about tools, resources, and information they have utilized to navigate the unique challenges of raising their kids. This session will offer strategies to help both you and your child thrive. Plus, you will get to connect with other parents facing similar journeys and leave feeling empowered and equipped to tackle the challenges of raising a child with a rare disease with confidence and resilience.
Register for this Community Conversation here.
We encourage you to forward this invitation to others who might benefit from attending!

Warriors for Kathryn Quilt Raffle
2024-02-02 19:00 - 19:30 UTC
Kaleidoscope of Hope is the name of this year’s quilt to be raffled off at the Warriors for Kathryn event on February 2, 2024, in Cornersville, Indiana.

Warriors for Kathryn 2024 Quilt Raffle Information:
Quilting tradition asks for a name to be selected for a quilt. “Kaleidoscope of Hope” is the name given to this year’s
Warriors for Kathryn 2024 quilt with all proceeds going directly to AHC research.

85” by 85” – King or Queen or Full (King coverlet with 6.5 in drop, Queen Bedspread with 12.5 in drop, Full Bedspread with 15.5 in drop)

The quilt top is a traditionally pieced (by machine) from a Sue Garman pattern called Stars for a New Day. There are a total of 4,050 individual pieces in the quilt top. It uses a mix of batiks and prints- 100% cotton. The backing of the quilt is made from Moda 100% cotton and the double batting of Quilter’s Dream

Wool (washable and hypoallergenic) over Dream Poly, both washable and hypoallergenic. ……made by Christine Marszalek

Ticket Information:
• Online Raffle Ticket Sales will close at 1pm Eastern Time on the drawing day.
• Tickets will be available at the event until 6:45pm Eastern Time.
• Tickets cost $5 per chance.
• Buy 4 tickets for $20 and get one free.
• Each $20 gets you 5 tickets. (10 for $40, 15 for $60, 20 for $80….)

To enter the raffle and learn more about AHC, go to:
https://ahckids.app.neoncrm.com/eventReg.jsp?event=72&

Warriors for Kathryn
2024-02-02 17:00 - 23:00 (America/Indiana/Indianapolis)
FRIDAY FEBRUARY 2,2024
5PM
Expo Hall – 2691 N. Park Rd. Connersville, IN
Help support a worthy cause through Warriors for Kathryn at Expo Hall in Connersville! Follow the event page on Facebook at https://fb.me/e/3F5hfAh9p for more information on Wine Bingo, Texas Hold’em, Dinner, Basket Raffle, Quilt Raffle, and more!

Valentine's Exchange 2024
2024-01-31
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.

Happy Birthday Joey!
2023-12-25
December 25, 2023
Joey Hawk turns 11 today, join us in wishing him a happy birthday and give the gift of hope for an AHC free future by donating to AHCF.

Happy Birthday Daxton!
2023-12-24
December 24, 2023
Daxton Douglas turns 3 today, join us in wishing her a happy birthday and give the gift of hope for an AHC future by donating to AHCF.

Webinar - Grief and Raising Special Needs Children
2023-10-14 12:00 - 13:30 (America/New_York)
Brad Thompson will lead what he calls a “guided dialogue” to explore the chronic nature of grief as it relates to families raising children with special healthcare needs. This will include the journey to acceptance of our situation and the challenges to that acceptance. It will also include the importance of finding real 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.
When: Oct 14, 2023 12:00 PM Eastern Time (US and Canada)
Register in advance for this meeting:
https://zoom.us/meeting/register/tJUqfu-vrz4oG9x7pEFaivqH7Ypv2i6SOKtf
After registering, you will receive a confirmation email containing information about joining the meeting.
Brad’s Information
Brad Thompson, M.A., NCC, LPC-S
Brad has been married to Karen for nearly 37 years. They have two adult children – Justin and Hali . Justin is married to Monica (Sisneros) Thompson and they have blessed us with two grandchildren – Ella Grace and Weston Day. Hali deals with the challenges of multiple special needs, both physical and cognitive, and is the inspiration for their work. Brad & Karen have been providing marriage retreats for couples who have children with special needs since 2009.
Brad is the Director of The HALI Project – a non-profit organization that provides counseling and education services for families who have children with special needs and the people who serve them. That work includes working with families, the education system, and the medical system. In 2018, he became the Director of Counseling Services for the Turn Center – a pediatric therapy clinic in Amarillo, TX that serves over 1,000 children with special needs and their families across the Texas Panhandle.
Brad has been blessed with many opportunities to serve in the primary care and special needs communities. Since 2008, he has worked with and in primary care practices to improve quality of care, provider efficiency, family health literacy, and patient/family satisfaction through the Hali Project’s Parent Partner Program.
He served on the Medical Home Advisory Committee for the American Academy of Pediatrics from 2004-2010. From 2011-2015, he has served on an advisory committee for the Patient Centered Primary Care Collaborative. In 2017, he was asked to lead the Family Support & Empowerment Program for the Child Neurology Foundation. Brad has served as CNF’s lead trainer for their Caregiver Support project since 2018.
While we would never have chosen for Hali the challenges that she faces every day, we feel incredibly blessed to share the lessons we have learned over 33 years with her to people across the country.

Race to End AHC
2023-09-30
September 30, 2023
Annual virtual race to raise funds and awareness to end AHC.

AHCF Family Meeting 2023
2023-06-22 - 2023-06-25
June 22-25
Embassy Suites
Glendale Los Angeles, California
Learn More About Family Meetings

Happy Birthday Sean!
2023-06-01
June 1, 2023
Sean Gerber turns 20 today, join us in wishing her a happy birthday and give the gift of hope for an AHC future by donating to AHCF.

Rare Disease Day
2024-02-29 | square lorem, Town Center Suite 1900, Southfield, AL, 48075, United States
Join people around the world raising awareness for AHC and thousands of rare diseases. Share our Facebook and Instagram posts!

Happy Birthday Kiley!
2023-05-10
May 10, 2023
Kiley Andrasco turns 22 today, join us in wishing her a happy birthday and give the gift of hope for an AHC free future by donating to AHCF.

Valentine's Card Exchange
2023-02-14
February 1-14
AHCF parent, Heather Gates, and daughter Jocelyn, host an annual Valentine’s Card exchange for people with AHC of all ages!
Email heather@ahckids.org to join!

Warriors for Kathryn
2023-02-03 17:00 UTC
FRIDAY FEBRUARY 3, 2023
5PM
Expo Hall – 2691 N. Park Rd. Connersville, IN
Help support a worthy cause through Warriors for Kathryn at Expo Hall in Connersville! Follow the event page on Facebook at https://fb.me/e/3F5hfAh9p for more information on Wine Bingo, Texas Hold’em, Dinner, Basket Raffle, Quilt Raffle, and more!

International AHC DAY
2023-01-18
January 18, 2023
Join us as we spread awareness and raise funds to end AHC on the anniversary of the discovery of the gene that causes AHC: ATP1A3.
