AHCF

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.
