Blog
What a Year! Let’s Make 2012 EVEN BETTER!
Dear AHC Friends,
Can you believe it’s been a year since we began the miracle journey that started with the Pepsi Refresh and has built such wonderful momentum towards getting to the cure for AHC?
What a transformation & what excitement has gone on since. We are in the analysis phase from the Genome project, and the preliminary results look “promising”. We have other research groups looking to collaborate with Utah & spur us along in developing treatments for the physical, cognitive, and behavioral aspects of AHC, as well as gunning for the cure!
To that end though, it is time to really shout from the roof tops like we’ve never done before. (more…)
Connections & Collaboration
I’ve been in DC this week for the US Conference on Rare Diseases. I must say that this conference ROCKS! Connections made with all sorts of people that will be of potential benefit to our efforts to treat and cure AHC: Key contacts in the FDA, NIH, SSA, Biotech, Academia, and other Foundations who have traveled the road we will need to travel on the way.
There are so many things I have learned here that will help shape the strategic plan for the Foundation, that I would not be able to do them justice here in this blog. Suffice to say that this was absolutely a conference we needed to attend. (more…)
Connections and Collaboration
I’ve been in DC this week for the US Conference on Rare Diseases. I must say that this conference ROCKS! Connections made with all sorts of people that will be of potential benefit to our efforts to treat and cure AHC: Key contacts in the FDA, NIH, SSA, Biotech, Academia, and other Foundations who have traveled the road we will need to travel on the way.
There are so many things I have learned here that will help shape the strategic plan for the Foundation, that I would not be able to do them justice here in this blog. Suffice to say that this was absolutely a conference we needed to attend.
If there is one theme that would characterize the Sessions I have attended (all geared for Patient Advocacy groups like ours) it would be that Collaboration is Essential. We as parents must collaborate as much as possible for we are on the front lines of understanding. Our Board Members must actively collaborate both on strategic and tactical matters to handle both immediate and future needs. Our researchers must collaborate to accelerate understanding. We must collaborate with our sister foundations and any other organizations (including government and industry) where we can to multiply our efforts. These are the things we will do in the months ahead.
There is one more day of sessions to go still for the conference, then a welcome trip home. Matthew has missed his daddy and Renee has missed her husband. I have missed them dearly as well of course.
Yours in Service,
Jeff
Pleasant Surprise
Wednesday, 8 PM. Doorbell rings unexpectedly. It’s a couple from our neighborhood. They had seen the little flyer we had printed about the 5K & Walk we had Sept. 10 (we had peppered a few of the neighborhoods around us, including our own). They were all apologetic about not being able to attend. They also came with a proposition: they want to put on a bbq fundraiser for us in Nov. (our neighbors do some website design & social media for this local businessman Big Al who is known for these fundraiser events). I share this with you as a joy, and as a reminder that doing little things like printing a flyer & putting it in neighbors’ newspaper box can lead to new wonderful possibilities.
Pepsi Refresh 1-Year Anniversary
Dear Friends,
Well, a few more days have past than I wanted since my last post. Been busy though putting together a celebration fundraiser to observe the 1 year Anniversary of our successful Pepsi Refresh run. Some have you have heard a bit about “1 in a Million”. You’ll likely be hearing more very soon! 
On a personal note, Matthew has had a few rough days here and ther over the past week. We have had several days where he has had multiple paralysis episodes (most very short lived, but a few full body episodes to boot). Excited that we have had 3 successful walks this year (with #4 this weekend). We also have a new “strategic plan” document with timelines, designed to make the process of putting on a walk as “cookie cutter” as possible . I encourage every parent to consider over the next few weeks being willing to put one on. We have several areas where multiple families live, and it just makes sense we should have walks there . Exciting times here & momentum contues to build. Off now to chat with Time Warner Cable on our PSA for the campaign.
Yours in Service,
Jeff
Pleasant Surprise
| Wednesday, 8 PM. Doorbell rings unexpectedly. It’s a couple from our neighborhood. They had seen the little flyer we had printed about the 5K & Walk we had Sept. 10 (we had peppered a few of the neighborhoods around us, including our own). They were all apologetic about not being able to attend. They also came with a proposition: they want to put on a bbq fundraiser for us in Nov. (our neighbors do some website design & social media for this local businessman Big Al who is known for these fundraiser events). I share this with you as a joy, and as a reminder that doing little things like printing a flyer & putting it in neighbors’ newspaper box can lead to new wonderful possibilities. |
AHCF wins $1000.00 Grant from IBM
Thanks to Nicole Brown an employee @ IBM we have been awarded a $1000.00 grant to help with education and awareness of AHC! Nicole logged 40 volunteer hours developing two brochures about AHC that we can distribute @ conferences, schools, Dr Offices and use @ fundraisers. They will be posted on our website soon. Thanks Nicole!
AHCF Featured on 365give
The premise of the 365give blog is simple: give one opportunity to make a difference each day for entire year. Today’s entry -number 253 in the series- is an appeal to help AHCF in our quest to win a $250,000 grant from Vivint.
Check out the post, and don’t forget to cast your vote for AHCF in the Vivint Gives Back campaign!
And our thanks goes out to Jacqueline for putting the spotlight on AHCF and so many other great charities!
