My name is Mary Kay Riley and I am the mother of Nick age 22, who has Alternating Hemiplegia . I am on the fundraising committee for *AHC*. Earlier this year...
Hello All, We had a little glitch with our Foundation Facebook Page and need everyone who is on Facebook to go to https://www.facebook.com/AHCKids and "like"...
Hi, guys! Sorry we have been absent lately. We hope everyone is doing well. I wanted to reach out to everyone because my husband and I are going to be putting...
Hi, Vicky! Both sound very familiar to us and we have experience the spasms and laughter. Our son, Rory (3) has experienced facial spasms and drooping on one...
These laughing spells sound so much like a temporal lobe seizure. Are they some form of dystonia? K Sent from my iPad ... [Non-text portions of this message...
Don't know if its a form of dystonia...but it looks like half of his face freezes in a grin like fashion where as the other side droops. This happens for a few...
Hve u ever tried a weighted blanket for him during these events? Addie was in children's for an emerg dental visit bc she fell and broke front tooth, exposing...
Has anyone tried medical marijuana for AHC? I have heard of some using it with intractable epilepsy? k Sent from my iPad ... [Non-text portions of this...
AHC Foundation money budgeted for research in 2012-2013: $200,000 Number of members on the AHC yahoo group: 398 If every Yahoo group member fundraised it...
This video explains how the game works.  http://youtu.be/z1zuw2RYUoI Simply send this link to your friends & tell them AHCF gets $14.  We have 5000...
Welcome back to the group & thank you for being willing to do this. Please call me 919.412.1870 & let's talk about what you need. We have some good...
Hi Roxie, I sent your contact information to Mary Kay so i'm sure she'll be in touch. Thanks!! Anyone else want to join Roxie and help us raise some much...
On Sunday, July 29, 2012, an article was published on the website of Nature Genetics titled, "De Novo Mutations in ATP1A3 Cause Alternating Hemiplegia of...
Dear AHC Families, There will be many congratulations and announcements from the Associations and Researchers over the next few days and we'll try to keep...
A reminder that our Fundraising Committee will meet this Wednesday on a Conference call. In light of today's news we are hoping for a crowd, so reserve your...
Dear Families, A thank you to all who have toiled so hard to make today's great news possible! http://ahckids.org/blog/thank-you/ My Best, Jeff Wuchich ...
Count me in! Please consider donating to Alternating Hemiplegia of Childhood Foundation www.ahckids.org Sent from my iPhone ... [Non-text portions of this...
What groundbreaking news! How wonderful that everyone is getting one step closer to being able to treat this disorder....
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Don Kilpatrick
donkilpatrick@...
Jul 31, 2012 1:09 pm
Thank you and congratulations to everyone involved in this research - researchers, doctors, family members, foundations. This is an encouraging step. ...
I know there have been some posts in the past but without taking the time to look back through all the old posts I was wondering if anyone has had experience...
Marcia, I am sorry to hear about Jennie's latest issue. While I haven't seen this with Emma, I did have a thought. If you are still looking for answers after...
A cause found - need the treatment - got money??  This is the moment WE have been waiting for! Because of your help in voting and our win of $250,000 from...
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Dominique PONCELIN
d.poncelin@...
Aug 1, 2012 5:57 pm
Definitely true, you are right Lynn, now that we have a first clue, the future of AHC research (so the future of our kids) is also linked to the capability of...
Hello Everyone, I took a break from being on here, now I am back! Yes! I would love to help answers questions and I would also love to contact people that has...
It was wonderful news that was published last week from the AHC research team. In order to continue research, NOW is the time to step up the selling of the...
Thank you Vicky. The dr's office has us doing bloodwork later today and a 12 hour video EEG on Tuesday evening. In the meantime I did send Dr. Langer an...
