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Thursday, December 5, 2013

NIH: Keep Hope Alive and Restore Lifesaving Study

Alone we can do so little; together we can do so much. —Helen Keller
The words of Helen Keller spoke greatly to me as I have reflected on accomplishments of the past few weeks. 
The National Institute of Health (NIH) has halted the only national study on rare genetic connective tissue disease. These diseases result in severe disability and even death for those afflicted. It represented the only hope thousands of families had in finding the cause and cure for these rare disease. We are asking the NIH to restore the 10 year study.
We have over 5,000 signatures supporting our petition. It is my goal to get 10,000 signatures to present to NIH/NIA. With this it is my expectation that the study will be reinstated and we will be assured that our data and specimens will not be lost. I remain confident that with each signature we are spreading awareness.
After a full nights sleep my body woke in pain, reminding me of a chronic illness that I have finally given into. It was that morning reminder that inspired me to work past the pain and start doing what so many of us with invisible illness have been speaking about. I wrote my first petition asking the NIH/NIA to reinstate research that is has been going on for over a decade. Although I  have not yet reached my goal of 10,000 signatures something has incredible has been happening. 
This is no longer my goal, but our goal. The patient organizations have come together united in our voice. We are empowering each other to do more. By collaborating we have shown the medical community that we will remain steadfast in our words. 
So today I would like to thank each organization for collaborating with each other for the betterment of the patient. I also would like to thank all the patient communities that have come together from EDS and Sticklers, to FMD and Brain Aneurysms, Marfans there are too many to list. Although we are far from done with our mission we will continue to support and care for each other in years to come. 
Croatian Alliance for Rare Diseases

Orphan Druganaut Blog

I encourage other organizations to get involved and help make a difference for the good of the patient. Today I am reaching out to all rare and genetic disease patient organizations and I am asking you for your support. 
Restoring the study will return hope, continuing the extensive work done over the last 10 years. It will ensure all the progress we have made will not have been in vain and keep us on a path to a cure. 
If the NIH continues with their current plan to end the study it will leave victims and their families without a place to turn for answers and send a message our lives are not worth the investment of finding a cure. Even worse, the samples and results already gathered could be lost, leaving scientists to start over.
Warm Regards,
Kari Ulrich

1 comment:

  1. How do you decide who lives and who dies, and who is to be left with no answers? Please, please put yourselves in these patients and their family's position. I can't fathom losing a child, spouse, sister, brother, grandchild, friend....pick one, for any reason, let alone a rare disease! And then to find out that ten years of research on that rare disease is ending!!!! That's like dying TWICE! Please, put yourselves in their position. I assume you love your family just as much as those who have lost a loved one to any of these rare diseases. Don't give up on them.....PLEASE! It could happen to any of us!