PSA to be distributed and aired
I'm Joe "Metal Cowboy" Kurmaskie, bestselling author, performer, bicycle travel adventure writer and advocate for HH I have Hereditary Hemochromatosis - Iron Overload. If not for luck, a very sharp doctor and an annual physical I would have died in the prime of my life without knowing what killed me. You could have it right now, your loved ones, friends. 1 in 9 are affected by this, the most common, deadly genetic disease int eh world that you've probably never heard of. That needs to change. We are raising funds for specific projects. 1. A petition drive and congressional push to place simple iron panel tests back on routine blood work worldwide. This level of screening would improve early diagnosis 20 fold!!! 2. we need $100,000 to distribute a series of PSAs we've created. We have commitments by cable, broadcast, radio and social media entities to match us 5 to 1 for each paid spot of airtime. So we'd get $500,000 in exposure from $100,000 raised.
We are not talking vague goals or billions needed for research - this is a simple disorder to detect and just as easy to treat when caught in time, unfortunately profit driven medical system saw not $$ to be made and $500 billion to be lost if a significant percentage of downstream illnesses which iron overload causes were to be prevented before taking hold. Flawed research guided public policy for the past 2 decades and it still does in many quarters. Your donations to these specific projects will change that and save countless lives.
Hemingway had it, Steve McQueen too. Beethoven, Steinbeck and Patrick Swayze... Got European ancestors? Get yourself checked! It's a killer... and it does its work quietly, taking men and women in their prime and burns like wildfire through families and generations.
*15 million carriers, 3.2 million with disorder in USA 2.7 million of them undiagnosed (1-9 carriers)
*No standard screening procedures in place.
*Body builds up iron stores in organs and tissues.
*75% asymptomatic. Organ damage takes place without you knowing it's going on.
*Very treatable - normalize iron stores with blood draws/phlebotomy/diet/exercise/avoiding alcohol, raw seafood.
*Early diagnosis and treatment = normal life expectancy. Late diagnosis: impotency, arthritis, cirrhosis, liver failure, heart failure, 8 types of cancers. Ever wonder why that family member, friend dropped dead when they seemed so healthy?
Why start an action network? Why support us?
I'm asymptomatic, an athlete, nondrinker/nonsmoker, who eats right but this disorder has silently gone about scarring my liver and if I had not gotten incredibly lucky would still be undiagnosed. After exhaustive research I realized that the medical establishment is failing or late to the punch on this disorder... and lives are in the balance.
Every two weeks an undiagnosed HH patient walks through every doctor in America's examination room and walks out no wiser!
I could have just gotten my treatments, complained about the lack of progress to family and friends, but that's not how I roll. I'm using my platform to try to make a difference. I've teamed up with advocates and HH sufferers themselves, Carol Jordan, Dr. Anne Linton and a team of supports to see HH becomes a household name and make lasting changes in the way the disorder is diagnosed, screened treated.
How ironitout.org Will Save Lives.
*Publicize disorder/increase overall awareness through national media campaign.
*Lobby for standardized/increased screenings. Submit screening proposals to medical community - CDC, AMA, Red Cross. Demand standard screenings/ferritin tests at annual physicals for those of European background.
*Decrease the amount of donatable blood being thrown away by hospitals/blood treatment centers.
*Pressure blood banks, hospitals and Red Cross for all locations to accept HH donations. We were successful in getting the FDA to lift all procedural bans on HH blood donations so now all blood centers must take our blood if we meet general population standards.
*Team up with Red Cross for national marketing campaign - HH patients as super donors to combat blood shortages and save more lives (donors and recipients).
*Educate public that HH patient blood same as standard blood. Donation frequency makes them a win/win for blood banks/Red Cross.
*Pressure Hospitals, Red Cross to offer standard ferritin screenings to all at risk populations and followup genetic testing. Cost offset/dwarfed by donation increase.
We hope you'll help by supporting this crowdfunding campaign for ironitout.org and get family and friends to contribute. Will have no plans to grow into a headquarters with a large staff. We will use funds raised to tackle the listed action projects. And when our goals are accomplished we will end our run, fold up our tent and call it a job well done. Help us make the need for this organization obsolete.
Please make a donation and help us hit our goal for these action projects.