Foundation Updates

Holiday Message from the AHCF Secretary!

Friends & Families,

On behalf of the Executive Board, staff, and volunteers that make up the Alternating Hemiplegia of Childhood Foundation, I’d like to wish you and your families a safe and happy holiday season.

It’s been a great year for the AHCF and I am appreciative for everything that you have brought to the table to make it happen. Whether you were voting in the Pepsi Challenge, conducting local fundraising events, or speaking proudly to co-workers and friends about the foundation and its accomplishments – you are the reason the foundation is moving forward with great success today.

If you happen to have the AHCF on your mind this holiday season, there are a few things you can consider to help the foundation, and scratch off a Christmas gift or birthday present for me in the process (I’ll be 43 on the 30th of this month)! (more…)

AHCF Families Save the Dates: June 29, 30 & July 1, 2012

Save these Dates for our Family Meeting in San Francisco, California. More details coming soon!

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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Research Updates

Analysis of Gene Sequencing to begin

The first installment of the Pepsi grant money has allowed us to use the latest genetic sequencing technology available.  As a result of this complete sequencing, we have unparalleled resolution of each subject’s genome. Theoretically, this should prevent any genetic mutation from being concealed (within the 3 billion nucleotide pairs in the human genome) and give us the best chance to find the cause (or causes) of AHC. This part of the project is now complete. The sequencing is finished.

We have just received the second installment of the Pepsi grant money which will be used to extensively analyze the massive amounts of data produced by the sequencing of each patient.  Patience will be critical, but we are hopeful that this round of testing will give us our best chance yet at finding the answer. We will eagerly await any news and will keep the AHC families apprised of any developments!

Blog

Kudos to MMI Public Relations (the PR firm helping us with 1 in a Million) and Business Forward NC.  Today  I will be 1 of 25 people who will interact with Surgeon General Rebecca Benjamin in a roundtable discussion here in Raleigh  about improving quality of life & health for ALL Americans.  I’ll be able to raise some awareness about AHC and the impact the disease has on health, not just of the sufferer, but of the entire family of the sufferer.   Helping disabled Americans be included in activities, and giving them access to ways to exercise & improve their health is a priority for Dr. Benjamin, so this is a great opportunity.

While the discussion might not lead to immediate monies for AHC research, certainly the encounter will not hurt :) and it just might open new doors we don’t yet know about.   The moral of the story is “keep telling the AHC story (your child’s story) to as many people that you can.  You never know who might open a door for us as we journey towards the cure.

 

 

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Happy Holidays Certificate

Think about asking your family and friends if they would consider making donations to the Foundation in someone’s name instead of buying them a gift.  We have a beautifully designed Holiday certificate to let them know a donation was made in their name Happy Holidays Certificate

Thank You and Hope Everyone in the AHC Family has a Joyful Holiday Season!

 

Charity Mania Tickets – Great Stocking Stuffers

We need your help to sell tickets! AHCF is sponsoring two sports fundraisers by Charity Mania!

Paul Hodes will chair Football Mania Super Match, and Mollie Erpenbeck will chair Hoops Mania.

Football mania is an exciting sweepstakes based on the popular “Squares Pools” played during Pro Football’s championship game, and Hoops Mania brings the same sweepstakes action to college basketball’s March championship.

Ticket holders receive a great collection of digital music and are entered into a Sweepstakes where participants can win $1,000s in cash prizes! Details can be found on the Football Mania Super Match Fact Sheet and the Hoops Mania Fact Sheet. (more…)

Walk-athon Raises Awareness and Funds for Rare Disorder

The sixth annual AHCF Chicago Walk was held at Paulus Park on Sept. 18.

By Josh Katzman

On Sept. 18, family and friends turned out for the sixth annual AHCF Chicago Walk in Paulus Park. Alternating hemiplegia of childhood is a rare neurological disorder. There are just four or five children in the area known to have it and only about 600 who have been diagnosed with it worldwide.

The walk-athon in Lake Zurich is one of four across the country that is coordinated by families of children with AHC. The other locations include Raleigh, N.C. (held Sept. 10), East Lansing, Mich., (Sept. 23) and Neola, Iowa (Oct.1). The Chicago area walk was started by the godparents of 9-year-old Emma Platt of Mount Prospect, who has AHC. Gene and Kelly Andrasco and their 10-year-old daughter Kiley, who also has AHC, are organizers of the event along with Emma’s parents, Andy and Vicky. (more…)