Family Gathering

2014 AHCF Family Meeting – Minneapolis Minnesota!

ahcf-conference-2012-109The Alternating Hemiplegia of Childhood Foundation Family Meeting will be held at the Hilton, Minneapolis/St Paul Airport, Mall of America www.mspairport.hilton.com  The meeting will take place June 26th – 28th. (more…)

Welcome 2014 & the AHCF Family Meeting!

Happy New Year AHCF Families and Friends, 

In honor of AHC Day, registration for the AHCF Family Meeting 2014 will open on January 18th!!  We will be posting details daily and we hope to see all of you in Minneapolis in June – without snow!!!
P.S. – Wondering what AHC Day is? It is the anniversary of the ATP1A3 gene discovery!

Photos From the 2012 AHCF Conference (Images courtesy of Jessica Bottali)

Presentations from the 2012 Family Gathering

Family Meeting Agenda 2012

Here are the slides from this year’s presentations, in MS Powerpoint format except where noted:

AHC Genetics Research Update – Tara Newcomb, MS, CGC

Overview of AHC – Dr Ken Silver

Epilepsy and AHC – Dr Mohamad Mikati

SUDEP – Dr Kathryn Swoboda

Dystonia Management in AHC – Dr Terry Sanger

AHC Association Reports:

Medical Home Presentation, Family Needs & Support, Medical Background & Referral, Ongoing Medical, Forms & Resources – Dr. Mary Coleman

Medical Home IEP’S & Transition – Joe R. Goyos

Nutrition Guidance in AHC – Maria Raspolic, RD

AHCF Direction for the Future, Closing Remarks – Jeff Wuchich

The following presentations are also in the playlist above and utilized video only:

Friday: Alice Belgrade  M.S.Ed., L.C.P.C., BCBA, Behavior Analyst - Behavior Therapy

Sunday: Parents/Caregivers addressing difficulties in raising an AHC child - moderated by Dr John R McQuaid, Ph.D. Professor of Clinical Psychology

Panel of Young Adults with AHC, describing Life with the disorder – moderated by Dr John R. McQuaid, Ph.D.

 

San Francisco – Thank You for a Great Family Meeting!

Lynn MacDonald EganAHC Kids Foundation:
AHCF 2012 Family Meeting has ended! I want to extend my appreciation and thanks to the work that Vicky, Sharon, and Pasquale (Sharon’s husband and foundation attorney) dedicated to making this meeting successful. This year’s attendance was the largest turn out in AHCF meeting history – 39 families – including families from the United States, Australia, Ireland, Bolivia, Canada, Iceland, Italy an…d France. (more…)

2012 AHCF Family Meeting

Dear AHC Families and Friends,

The Alternating Hemiplegia of Childhood Foundation Family Meeting will be held on Friday, June 29th, Saturday, June 30th and Sunday, July 1st, 2012 in beautiful San Francisco, California. This year we are asking all families and friends to register so we can have an accurate count and enough materials for everyone. We will be having clinic, genetic counseling and behavior appointments starting on Wednesday 27th and Thursday June 28th.

The Family Meeting will kick off with an AHCF sponsored luncheon at noon on Friday June 29th with all of the registered Physicians and AHC families and friends invited. (more…)

PowerPoint Files from the 2011 Family Gathering

You may have already seen the videos and pictures from this year’s Family Gathering. Now you can download the actual slides used in our presentations.

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Raleigh Family Meeting Presentations and Pictures!

The AHCF family meeting was held in Raleigh, N.C., July 22-24, 2011. We incorporated many suggestions from the AHC families. The conference was a great time for families to meet and exchange information and ideas. Although it could be emotional and overwhelming at times, most families found it a positive experience and a good time to interact with the presenters about the topics that interested them the most.

The agenda displays the speakers and presentations. All of the presentations were recorded by a professional Videographer so we could share the information with those unable to attend. We also had a great photographer from Positive Exposure taking pictures of the AHC children and young adults as well as some of the siblings and families and of course our group picture! We look forward to seeing many of the same faces and hopefully lots of new ones at next year’s conference in San Francisco, June 28, 29, 30, July 1st!

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Mark your calendars and join us at the Family Meeting!

The family meeting will be held in Raleigh, N.C., July 22-24, 2011. The meeting will be at the Embassy Suites RDU/Cary. We have reserved blocks of rooms starting on Tuesday July 19. (more…)