Alternating Hemiplegia of Childhood Foundation
Join us in beautiful Los Angeles, Glendale California this summer for the 14th AHCF Family Meeting. We are looking forward to meeting once again in person! Friday June 23rd, Saturday June 24th, and ½ day Sunday June 25th will be devoted to learning from topics about the latest research findings to suggestions for daily living with AHC. Meet other AHC families to socialize, exchange ideas and bond. Get energized by the wonderful support of our AHCF community!
***Childcare Options – during the meeting, either a parent or a designated caregiver is required to be with your AHC individual at all times in the “Kids” room, next door to the main conference room. Alternatively, the foundation is looking into utilizing a professional caregiver service which would require those families unable to bring a caregiver to be charged a nominal fee.
Thursday June 22nd
Research Appointments:
All families are invited to participate in Research Appointments with the MGH Team at Harvard under the direction of Dr. Nutan Sharma. These appointments are for new and older families alike and are geared toward collecting data that will advance the AHC Natural History Database that is needed for eventual clinical trials. They include a history, physical exam, and DNA samples.
To schedule an appointment please contact Trisha Multhaupt- Buell at TMULTHAUPT-BUELL@mgh.harvard.edu or call 617-726-5470.
For more information click here (what to expect)
“Office Hour” roundtables will be held all day Thursday with Medical and Professional experts in Neurology, Dystonia, Genetics, & Epilepsy, among others. No appointment needed! Come and freely ask questions and be part of these informal discussions. Great opportunity for learning!
Meet & Greet – All families are invited to join us for a “Meet and Greet” pizza gathering. Mingle with other families, kids, docs, and board members to break the ice and start the conference off with a warm welcome.
Event Registration
Event Registration on the next page will collect the names and information of all attendees in your party that’s needed for a successful meeting, including any conditions you may need to share.
Registration fees listed are for “Early Bird” registration and are good until May 15th after which registration fees will increase!
Registration fees include a “Meet & Greet” pizza welcome gathering Thursday, an Ice cream social Friday and an AHCF sponsored luncheon Saturday.
Hotel Registration
The Family meeting will be held at the Embassy Suites in Los Angeles, Glendale, California. A block of rooms is available for our guests at an event discount. Rooms include a discounted parking fee of $5 from $25.
All rooms are two-room suites with a refrigerator and microwave. Some adjoining rooms are available.
***Handicap rooms have also been set aside for our group but will go quickly, so book early by calling the hotel at 818-550-0828 and select option #1, Please do not select the “front desk”. You can also call 1 – 800 Embassy (362-2779).
You need to have our group code (ACF) and your credit card ready, which will not be charged until your arrival.
Note: In order to get the group discount If you book connecting rooms or are adding three days before or after the conference, the price won’t reflect the discount, so you need to go ahead and book them through the site, then send an email with your confirmation number to Teresa Pegorari, and she will correct the amount. The booking program doesn’t recognize those entries.
If you have any further requests or need help with the booking, please email Teresa Pegorari at Teresa.Pegorari@hilton.com
More Hotel and Area Attractions Information
More details about the Embassy Suites Los Angeles and area attractions can be found by clicking here.
Meeting Agenda
The Agenda is coming together with meaningful presentations addressing a wide range of topics, from research and medical care, to therapies, to caring for yourself as you manage a family with AHC.
The script is in final edits!
About Our Presenters
Speakers from Science, Medicine, Professionals and AHC Families will be at this years meeting.
Check back often to see the Family Meeting Agenda as it’s finalized and the list of confirmed Speakers.
Our Casting is nearing completion!
Reasons Why You Should Attend the Family Meeting
- Understand how to cope with the emotional challenges of living with AHC
- Develop strategies for getting involved with the AHC Community
- Build a support network and talk with others who share similar experiences
- Learn about current therapies from the medical community
- Learn about the cutting-edge gene therapy research projects we are funding
- Be empowered to become a more effective partner in your own healthcare
- Discover ways to increase public awareness of the disease
- AHC individuals and family members alike make new, long-lasting friendships
Family Grant for Family Meeting
*** If you find the requested registration fee a hardship and may prevent you from attending please get in touch with Sharon at sharon@ahckids.org
***We also would like to remind you that AHCF has a Family Grant available on a limited basis of up to $500 per family and may be used for attending the Family Meeting. If you are interested please get in touch with Cate for more information at cathleenjquinn@yahoo.com
***We are also very happy to provide letters of need or for Visa applications to attend the meeting. Please email Sharon as early as possible to accommodate such requests. sharon@ahckids.org
