August 25th, 2011 20:44 EST
Actively Helping Children and Families The AHCF August, 2011 Chant: Vivint! Vivint! Vivint!
Hello again, readers. Over the past few months, I have been speaking to you about the truly incredible organization - AHCF - that is working night and day to help families and children whose lives have been dramatically affected by AHC - Alternating Hemiplegia of Childhood.
Two weeks ago we spoke about these amazing kids and what YOUR donation of money, time, or a simple vote, can bring to the lives of children suffering from AHC. This week, I want to delve a bit more into the phenomenal and much needed research that is being done to help find a cure for this disease, and what YOUR heart and soul can do in order to make that dream a reality!
Now AHCF has a new home on the web at AHCkids.org. They have been updating the look and feel of the site, offering a new layout, features ,and more and more data and information to help out all the families, friends, supporters, and even newcomers, to catch up on all the news from AHCF, their research partners, and their outstanding team of volunteers!
To briefly recap, AHCF - (AHCKids.org) - is made up of a group of individuals across the nation who work together to achieve a cure for AHC, and others are needed to jump on board and help! AHC stands for Alternating Hemiplegia of Childhood, a rare neurological disorder in which children experience bouts of temporary paralysis affecting one or more parts of their body. These episodes can last for minutes, hours even days, and are sometimes very painful. AHC also severely affects a child`s ability to learn - as if the brain `short circuits - and many AHC sufferers also have epilepsy.
Now the AHCF speaks for these children and their families. President, Jeff Wuchich, and the incredible Board and volunteers at AHCKids.org, keep everyone informed of the latest news and events that are happening in 2011 through the AHCF newsletter, as well as holding fundraising events across the country to aid in their pursuit of a cure.
We have spoken about individual cases that have been published in the news, of children suffering from AHC, and your donations, time, help - whatever you can give - goes to these amazing children. But there is a wealth of research being done on AHC, and one place this is occurring is at the University of Utah.
As it is stated on the AHCF website, under the direction of Dr. Kathryn Swoboda, The University of Utah Pediatric Motor Disorder Research team, has been working on several current and upcoming projects for AHC.
Now, I am certainly not going to delve into the medical terminology, but I do want all of you readers out there to see what an incredible, in-depth job these amazing people are doing. One such point to bring to your mind is a clinical trial of Sodium Oxybate (SO), which is now in its final stages, with six targeted participants enrolled. Four of the six participants have completed the entire one-year study, and the process of validating and verifying the data for each study participant is under way.
The University of Utah Pediatric Motor Disorder Research team are continuing to follow-up with the remaining two active participants who have four to six months left in the maintenance phase of this particular clinical trial.
The AHC online registry, and participants enrolled in the Pediatric Motor Disorder Study, has continued to grow with fifty-eight families now enrolled! The AHCF is also extremely glad to report that twenty-six families have completed the AHC medical questionnaire. Readers, this AHC registry and medical questionnaire have proven to be some of the most valuable tools in being able to gain a better understanding of the characteristics of AHC, as well as being able to contact families in the future about new treatments for AHC, or studies for which they may be eligible.
Think about this. This AHC registry is absolutely fantastic news for finding a cure, and YOUR donations go to help the AHC registry get even larger, as well as sending funds for these incredible clinical trials that may, just perhaps, be the key to solving AHC and curing the disease for good!
The `Pepsi Refresh` grant was also a huge gift, allowing even more funds to search for the genetic basis for AHC. As genetic analysis continues to be more and more advanced, that grant has allowed research facilities to use the latest genetic sequencing technology that is available. And, with prior studies into AHC, the research team has been able to do targeted analysis, looking for mutations in genes that have been identified in other `more-understood` diseases. The answers to the AHC questions ARE just around the corner, and the funds, time, love, heart, and wisdom that each and every one of you can bring to the table will help find those answers even faster! Finding the history, finding the cause, WILL find the ultimate cure!
So you see, this is just one brief look into the amazing and much needed research that the AHCF is trying with all their time, energy, and funds to make a success! And, as I have said to you all before - and I will CONTINUE to CHANT until the opportunity has come to an end Vivint! Vivint! Vivint!
On June 14, 2011 the Vivint Gives Back Contest began, and this is one contest that will give the AHCF much needed grant money to find the answers even quicker! Millions HAVE to vote! And every single day YOU can be one of those millions! And with YOUR votes in the Vivint Gives Back Contest, YOU will enable the AHCF to win $250,000.00 to further the research!
And, REMEMBER, voting is EASY!
Each and every one of YOU have to head to: http://www.vivint.com/givesbackproject/charity/57. This is the site that allows YOU to vote for the AHCF to win that $250,000.00 grant to continue the work that they began by winning the `Pepsi Grant.` Once a day YOU NEED to visit this site and vote to help the Alternating Hemiplegia of Childhood Foundation receive a part of the $1.25 million dollars that Vivint is awarding to local charities. The Vivint Gives Back Project is a program run by Vivint, Inc, which allows Facebook users to help Vivint support charities that are doing outstanding work in neighborhoods and communities across the United States. It is a great opportunity for these local charities to be recognized by their supporters! Help AHCF!
AND, REMEMBER THIS!
On September 18, 2011, YOU can participate in the 6th annual Chicago, Illinois, Walk With Us. This AHCF walk kicks off at 9:30, when registration begins, and walkers can join with flexible start times up to 12:30 pm.
The `Walk` is held in honor of Kiley Andrasco (10), Emma Platt (9), and all families affected by AHC. The Chicago Walk started in 2006 when Emma`s Godparents responded to a call for action by the AHC Foundation. Each year, various AHC families from the Midwest join together to raise awareness for the disorder and donate funds in support of the foundation. `Skates,` the mascot for the Chicago Wolves hockey team, will appear! Free frozen custard from Culver`s of Lake Zurich; a 50/50 Raffle with additional tricked-out raffle baskets; wooden playground equipment; sport games; carnival games; face painting, and more! Not only will your `big heart` be helping this incredible organization, but you will also have one of the most fun and entertaining days you could possibly imagine!
The CHANT will continue, everyone. August, August, August IS Vivint, Vivint, Vivint month! Go to the website, AHCKids.org - read the stories of these amazing children and their families - become a part of this incredible group who needs the support and the power that YOUR vote and time can bring to them!
Until Next Time, Everybody!
For the Vivint Gives Back Program, go to YouTube and learn about AHCF in action:
And Vote here at http://bit.ly/frR3GZ
You can also VOTE TODAY and EVERY DAY for the AHCF to receive that all-important funding here:
Become a follower of AHCF`s President - Jeff Wuchich at: https://twitter.com/jwuchich
Go to Twitter daily and see how YOU can help!
And for additional information or questions about the AHCF go to:
write to: email@example.com