There has been a BIG slowdown in donations for our NORD POIS research fund! Only a valiant few have made donations these past few months. Below, there is a very good but typical story of how a research donation to a fund like NORD can save and greatly improve lives.
In fact, if it were not for Nordnurse (Stefanie) who works daily with rare disease causes, we would still be flailing around, thinking, scheming, supposing and inventing, to find a solution to the POIS problem.
Haven’t we seen enough doctors who don’t take us seriously? Haven’t we seen enough to see that the only ones who care are the effected themselves? Maybe we could FIND the cure ourselves, but we would have NO cooperation in implementing it without the support of some real, peer-reviewed, scientific research.
It’s beyond saying that we must support our research fund -- and must bring it to life!
It is an absolutely necessary requirement. All of our effort, time, ideas and concepts are worth absolutely zero without it.
What choices do we have? We can sit on our haunches, waiting for the money to magically appear. Or – like other groups with rare conditions, we can take the bull by the horns. We MUST do our part to get that basic research started!
Nordnurse sent us an inspirational story recently, and we felt that it would be a good story to share with you all–
”There's a physician on NORD's Medical Advisory Committee (MAC),
Dr. Robert Campbell, Jr -- an angel who poses as a human being here on earth.
As a pediatric orthopedic surgeon, Dr. Campbell’s special area of interest is a group of HORRIFIC disorders that begin in infancy and childhood – called “thoracic insufficiency.” Basically, the ribs do not grow, and the baby/child literally and inevitably suffocates to death.
When Dr. Campbell, as a new researcher, applied for a NORD research grant for thoracic insufficiency, back in the late 1980s, he knew that he would have an uphill battle. Having had a first career as an engineer, his proposal was unusual, definitely “outside the box.” Based in solid medicine, he proposed an idea for an expandable titanium rib – a medical device for these fatally ill children.
There were many applications for this one $30,000 grant, which had been donated in full by the desperate parents of a young child who was suffering terribly and facing certain death. NORD’s MAC liked Dr. Campbell’s proposal, despite knowing that it might be very difficult for him to get the type of future funding from government or private industry. Despite this concern, they trusted their appraisal of his proposal’s scientific merit, and awarded that grant to him.
The rest… as they say… is history.
Because of that first basic NORD study, Dr. Campbell later received major funding from industry. He has since patented the titanium expandable rib, and these children no longer die a slow, miserable death. They go on to live their lives!
The expandable titanium rib is now “The Standard of Care” for children with this disorder.
http://www.c-spanvideo.org/videoLibrary/clip.php?appid=598537344
Dr. Campbell joined NORD’s MAC as a senior attending physician and researcher about eight years ago. He was recently honored on Capitol Hill for his unswerving work to save the lives of children with this horrible disorder (thoracic insufficiency).Fellow POIS sufferers and comrades – we NEED that basic research – and we need those funds – NOW! Our group focus must dramatically change – from speculation to ACTION. We can and should continue posting our comments, asking our questions, and sharing our experiences. But if we want a way out of the hell of POIS – which can only come from scientific research – we must walk the walk!
The next grant cycle at NORD begins in March 2012. That gives us six moths to raise ~$30,655. Monthly, that equates to ~ 5,100/month. That translates into ~ $50/month from 100 donors each month.
Walking the walk, taking action -- this requires EFFORT. Stefanie knows from experience at NORD that
only this kind of personal effort lead to the road of a real solution.
We propose a serious pledges database, where there will be a fixed time of 30 days maximum to register your pledge. This will provide more time over which to amortize any payments. Pledges may be made as a lump sum or divided over months to come.
We require a minimum of donors (100), as we cannot expect a few to pay the majority. Every donor will be granted a place in a VIP area on the SMF forum where all things pertaining to the grant will be discussed, and first information will be disseminated.
Upon pledging the required amount, monthly payments will be begun. Each pledge will be billed (as a formal reminder) at which point his pledge should be converted into an actual donation. Each donor will donate personally to NORD so as to (1) receive any tax deduction and/or (2) maintain anonymity (two issues not covered by other systems such as thepoint.com).
This program was devised as a means to be assertive in the implementation and follow through of the research program, to avoid extra costs and limitations imposed by outside entities and to benefit, through personal management of money and donations by each individual.
Comment on the details of this Assertive Donation Program. can follow. Thanks for your input. The database will be generated as soon as possible.
POIS Forum Administration,
Demografx
Daveman
