AHCF President's Corner
Countdown T Minus 7 Days & Counting
Dear AHC Families & Friends,
Can you feel the excitement building? IT IS! We are on the verge of making HISTORY! Our 1 in a Million Campaign will be a success thanks to YOU!. We have materials for you to use (flyers, business card sized info cards, email templates, a 30 second Video PSA, & story points for you to approach media in your local area. We’ll have pre made Twwets & Facebook posts (and how & when to use them) The key is to take action & use them 
We’ll have them posted by the weekend. There is a how to video to go with it, and support from me &, the Fundraising Committee, and the Board. All we need to do is more of what we did during the Pepsi Refresh, in a more focused and organized fashion, and we will succeed. THAT IS WHAT WE HAVE WORKED HARD TO PLAN TO DO!
Check out www.ahc2012.org & let me know what you think! 2012 is going to be the year for some answers for AHC, and we need to be ready to capitalize on new findings. Your efforts will truly make a difference! Thanks in advance for helping out & I look forward to working with you!
Yours in Service,
Jeff
1 in a Million Campaign Countdown- LET’S GET STARTED
AHC Families and Friends,
We need your help. Remember October, 2010 when we found out we were accepted for the Pepsi Refresh & we started gearing up for the big adventure that created the HUGE victory that has catapulted research & has given us renewed hope?
- Well, we have learned some great lessons from that campaign and are now poised and ready to do something TRULY AMAZING!
- Are you ready to make history? AHCF is launching a fundraising campaign called “One in a Million”, named because our kids’ incidence of the disorder is 1 in a million. Can we really get 1 million people to give us $1? YOU BET WE CAN!
- We are going to launch this historic campaign on Rare Disease Day, February 29. After our initial big push, this campaign will take on a life of its own & will spur us on to victory. (more…)
30 Days Until Rare Disease Day- Campaign “Soft Launch” Tomorrow
Rare Disease Day in 30 Days. Starting tomorrow, we’ll be soft launching a a campaign that will have its “official launch” on Rare Disease Day. Our campaign site should go live then www.ahc2012.org I’ll be clear. The AHC Foundation must raise $1 Million in 2012 or critical research WILL NOT HAPPEN! But with your help spreading the word, we will raise it 1 person, $1 at a time. “Will you be 1 in a Million?” Thanks in advance for saying “YES”!
Rare Disease Blog Hop
There are less than 30 days to World Rare Disease Day on February 29. The RARE project is the host today of a Rare Disease Blog Hop. Over 40 bloggers are uniting to blog today to raise awareness about this important day and on ways that you can get involved. As President of the AHC foundation, and father of 4 year old Matthew who has AHC (which stands for Alternating Hemiplegia of Childhood) I could not pass up the chance to be part of this blogging endeavor. See Matthew here http://www.youtube.com/watch?v=VORcIUQukm0
The statistics around rare disease are astonishing. 1 in 10 Americans is affected by some type of a rare disease. That’s a huge number of people – 30 million in the U.S. according to the NIH (and over 350 million worldwide.) Did you know that there are 7,000 different types of rare diseases? The amount of drug approvals for the entire rare disease community each year is extremely low – potentially only 5 or so drugs a year out of a 21 total drugs the FDA approves. To date, only 5% of rare diseases have a treatment! For 95% of rare diseases, there is not a single approved treatment. AHC is one of those 95%!
There are several things the AHC Foundation is doing, not only to help raise awareness for AHC, but also to help in the general awareness of Rare Diseases:
- The AHC Foundation will be joining NORD (the National Organization of Rare Diseases) – the voice in Washington for all who suffer from rare diseases. Supporting them helps ensure our AHC kids & adults will get the attention at the federal level that they deserve
- We have an awareness & fundrasing campaign in store for Feb./March, with big plans for Rare Disease Day that will (we believe ) capture mass media attention
- We will have a number of our parents putting on events in their local communities to promote awareness of Rare Disease Day & of AHC in conjunction with our fundraiser.
- I will continue to attend the US Conference on Rare Diseases & Orphan Drugs Hosted by NORD & EURODIS in October at Washington, DC, like I did last October.
- I shared Matthew’s story on the Global Genes Website.
WIth the advancement of technology, the answers to rare diseases are within reach, The good news as the answers that come from rare disease research may have great benefit for more prevalent diseases. For example, nearly 50% of AHC sufferers, including my son Matthew, have epilepsy. Breakthroughs for AHC could mean breakthroughs for the millions who suffer from epilepsy as well.
Hopefully my musings here have made it clear why you should Care about Rare!
My Best, Jeff
Meeting the Surgeon General Today
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.
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
