Blog
AHC Families please join “Rare Connect” the new name for “Rare Disease Communities”. Connect with AHC patients and families from all over the world! Tell your story and connect 
It’s a combined project of Nord and Eurordis.WHERE ARE THE PARENTS?
Where are the parents?
They are on the phone to doctors and hospitals and fighting with insurance companies, wading through the red tape in order that their child’s medical needs can be properly addressed.
They are buried under a mountain of paperwork and medical bills, trying to make sense of a system that seems designed to confuse and intimidate all but the very savvy.
Where are the parents? (more…)
Rare Disease Legislation Response
Rare Disease Legislation Response,
This is the letter I received in response to a letter I wrote to my senator advocating legislation to speed up FDA review of treatments for rare diseases. Every Parent can write a similar letter and keep up the pressure to have our legislators acknowledge the needs of rare disease patients. Together we become a strong voice advocating for the rights of those suffering from a rare disease.
Dear Ms Ciccodicola,
Thank you for contacting me regarding legislation and research focused on rare or life-threatening diseases. I appreciate hearing your thoughts on this important issue. (more…)
What Lehigh U. & Patti Austin Taught Me …
Dear Friends,
In reflecting on our progress so far in the 1 in a Million Campaign to Cure AHC, two stories gave me some good insights into how we WILL succeed. The first came Friday night in March Madness when 15th seed Lehigh University eliminated the 2nd seed Duke Blue Devils (sorry to our Duke fans and to our research collaborators there ). A key ingredient to Lehigh’s success was their confidence. They believed they were capable of beating Duke, and they made that belief reality bolstered by that confidence. We here in the world of AHC can relate; it was that same confidence we rallied around during the Pepsi Refresh in November, 2010, and it propelled us to victory. WE WILL TAP INTO THAT SAME CONFIDENCE HERE:). We are even better organized than we were then. We have more people involved than before. We just simply need to execute on a daily basis, and we WILL TASTE THE SWEET VICTORY OF ACCOMPLISHING OUR GOAL! (more…)
Around the Triangle Interview
From Jeff;
Shoutout to http://www.facebook.com/stevesedahl for the Around the Triangle interview he did with me about the 1 in a Million. It aired today on all the Triangle Clear Channel stations. I heard it on 100.7 The River. Anyone hear it on G105, Kiss 93.9 or RDU 106.1? Now we need to get Clear Channel Stations in cities like Chicago, Detroit, San Francisco, New York, and anywhere our families may be willing to share about their child & what we are trying to do!
GREAT START!
Dear Friends,
The 1 in a Million Campaign is off to a great start. So many emails coming in, so many friends & supporters checking in. What a heartwarming experience. We are still busy counting (many people said they were sending checks, and we had some “pre-campaign” contributions), but the totals are likely close to the $10K mark, which means we are already 1% towards are goal. A great start indeed!
Now we need to build on that successful start. Can we get to 2% today? YOU BET WE CAN! We just need to make some new people aware about AHC (usually -not always, but usually- when they become aware, they help ) (more…)
BLASTOFF!
Dear Friends,
BLASTOFF! Launch day! The beginning of a historic mission! Time for a NEW MIRACLE! Our 1 in a Million Campaign has begun. We are on a GLOBAL quest to
- Reach the likely THOUSANDS of undiagnosed cases (1 in a million ratio leads to est. 7000 cases vs. 700 known) – we know we are not perfect in the US & Europe in diagnosing cases, so this ratio is probably eve n LOWER (meaning even MORE CASES)
- Raise $1Million towards the next phase of research (Anticipating that we will be able to announce some BREAKTHROUGHS soon) and to help our kids & adults have a better quality of life NOW!
- Accelerate the Journey to the CURE (more…)
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 Tweets & 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…)
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.
